Hi Pia,

I cannot remember the "welcome" message, so there is no harm done at all. I
do not post to Spondyville all that often, only when we have newcomers and
the others are a little on the chatty side ;-).

The others are well aware that I had a rather unfortunate accident in late
November last year, when I fractured my coccyx for the second time. I do
suspect that the first injury has a lot to do with my Spondyloarthropathy
diagnosis. Believe it or not, I got that diagnosis in 2000 after I had a
fall (ho hum) at my local parish church (long story and I am so proud of the
fact that I did not swear). In that case I had wet shoes because of rain,
and I slipped on the vinyl floor. I sprained my left ankle (ho hum) yet
again, but the next day I was very sore in the low back and had to make a
doctor appointment for a check up. The x-ray report indicated that I had
sacroiliitis and suggested Spondyloarthropathy. However, I admit that I did
not understand the diagnosis because I had no sign of psoriasis or anything
like that, yet I had symptoms that go back to at least 1987 that indicated
AS. I am HLA-B27 negative and this made diagnosis so much harder, especially
when doctors seem to think that one needs to have the HLA-B27 gene to have
AS. Hopefully, as more information becomes available from patients all
around the world, those opinions will be overturned for good.

In the long run, I am fortunate that my doctors prescribed the NSAIDs such
as Orudis and that I was using them over a long period of time prior to
diagnosis. It has meant that my inflammation has been controlled for the
past 30 years. This is one reason why I rejected the fibromyalgia diagnosis
- I was responding to the NSAIDs and if the problem was just FMS then I
should have had no response.

MaggieinOz

-------Original Message-------

From: Olympia Chagouris
Date: 1/02/2007 9:20:33 AM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] I'm New Too! Sort Of...

maggie:

I thought you were new to Spondyville...you've been here a year and I send
you a "welcome"...haha!!!

Pia

Maggie <maohearn@...> wrote:
Hi Maria,

Welcome to Spondyville. I have been frequenting this town for almost a year.
I received my dx for AS last year.

A word of warning about Ibuprofen. This is a NSAID and should always be
taken with food, and you must stay within the recommended limits for the
medication. If you fail to take this medication with a full stomach then you
really do risk getting ulcers.

As a woman you might find that you do not progress as fast as a man with AS
and if you have had the disease for 30+ years then you might be less likely
to progress. However, the aim is to make sure that if you do continue to
fuse that you are upright and not bent.

If you have access to a hydrotherapy pool then I do recommend that
hydrotherapy is added to your routine.

MaggieinOz

-------Original Message-------

From: mdbritten
Date: 1/02/2007 3:22:36 AM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] I'm New Too! Sort Of...

Hello all! I joined the group a while ago, but just got a chance to
post. (I chase my 2 year old son around all day). I've had AS for 30+
years, since age 7 as I can remember, diagnosed around year 2000ish? I
have somewhat mild pain, at least I think. I'm fused in the neck and
SI, limited hip movement, knees, feet, blah blah, blah. I've gone
through a variety of drug regimes over many years, but have settled
back into OTC Ibuprofin for the last 7 years or so. I lead a fairly
normal life and try to keep up my exercise and stretching(but can
always do more). Still have pain though and I'm really worried about
progression. I'm wondering how and when you decide to take a step up
to Enbrel, Remicade or other?

[Non-text portions of this message have been removed]

---------------------------------
No need to miss a message. Get email on-the-go
with Yahoo! Mail for Mobile. Get started.

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Hi Tyler,

I have been on and off the NSAID medications for 30 years. They are very
effective, and they were so effective that they were masking the true
inflammation behind my condition. When I was diagnosed as having
osteoarthritis I stopped taking the Celebrex for a while. It was at this
point that my inflammation markers changed and I got a better diagnosis.
Also, I have already had an episode with an ulcerated stomach so I want to
keep the medication at a suitable low level.

When I started on the Celebrex I was told to take it for a time and then
stop. The idea is to make sure that it does not build up to the point of
causing serious side effects. I took the Celebrex after I had my fall and I
am having a break after two months of using Celebrex. I find that I respond
rapidly to the Celebrex.

My other problems are best resolved by keeping up with the exercise regimen
which I have been pursuing since last March, and with the increased walking
that I have been pursuing since last November. I have specific foot problems
and I am dealing with those problems by using my orthotics. I have some
nerve problems and Lyrica works well to keep that problem under control.
However, I am out of Lyrica at the present time but hopefully will get some
more soon. I have pinched nerves in my feet and this is the cause of my foot
pain. The neuromas could have been caused by shoes that were too tight when
I was a teenager - I have had a struggle with calluses since I was a
teenager. Celebrex can help with this inflammation, but I prefer to stretch
my ligaments since this gives the best relief.

I need to renew my Celebrex prescription but will only do that after I have
finished my course of Rulide (I have a chest infection). I do not want my
feet hurting at my son's wedding so I will be taking the Celebrex as
necessary to take care of the niggles.

My problem is really very mild, especially when I compare my situation to
the situation of others. I can manage to keep my neck from being too stiff
by being a little more diligent with the neck stretches and exercises. I
guess what I am saying is that I am at a stage where I do not need constant
medication, but that gets reviewed when there is an increase or a flare in
progress.

MaggieinOz

-------Original Message-------

From: Tyler Hyder
Date: 1/02/2007 2:53:39 PM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] new member also

Hi Maggie~

I just had a thought. You mention that you do not use the biologics which is
fine...we all have to decide what's best for ourselves. I do get concerned,
though, when I hear people say they use Celebrex and other such meds "when I
need it". These meds are not like aspirin or pain relievers--many of them
are most effective with a ramping up period. That is, they work most
effectively when taken on a regular schedule rather than intermittently.
Some of them may not reach full effectiveness until taken regularly for
several weeks.

I do not want to sound discouraging to you, but it may be worth giving this
idea a second thought. Perhaps--in the long run--you would have fewer
problems, or less severe outcomes if you were to use an AS medication on a
more regular basis.

Just a thought...

Tyler
----- Original Message -----
From: Maggie<mailto:maohearn@...>
To: Spondyville@yahoogroups.com<mailto:Spondyville@yahoogroups.com>
Sent: Tuesday, January 30, 2007 11:28 PM
Subject: Re: [Spondyville] new member also

Hi Kellie,

Welcome to Spondyville. I understand what you mean about the relief to
finally discover the real cause of the pain. I can relate to the time that
it has taken to get that dx. I was diagnosed for the first time last March,
even though AS was suspected in 1988. It was not until a bone scan showed up
the extent of my arthritis that I started to push to get a better diagnosis
than fibromyalgia. I am blessed to have a very patient GP who does not think
that I am a hypochondriac, is aware that I check out information on the
Internet and is very supportive. My husband, on the other hand has accused
me of being a hypochondriac because I use "big fancy words".

Every time I tried to exercise I would strike a new problem that served to
make me feel depressed. I have managed to fall out of a lift, fall down
stairs and had all manner of accidents. A car accident in 1981 left me with
a severe whiplash injury, and I have never fully recovered. Other injuries
from the workplace followed, including falling out of the lift. Then last
November I lost my balance, ended up slamming into the edge of my swimming
pool, and have fractured my coccyx for the second time.

Now for the good news because I am managing to handle my situation without
the necessity for Enbrel, Humira or Remicade. I take Celebrex when I need it
for example to reduce the inflammation that resulted from my injury. My
doctor pushed and pushed to get me to take exercise seriously, and finally
he succeeded in getting me to take on hydrotherapy. I wish that I had
started 5 years ago. I have been doing very well with the healing of my
coccyx because I have been consistent with hydrotherapy, plus I have been
walking, walking and walking. As soon as I had my new orthotics I took off
and my steps (which I measure with a pedometer) increased so that I started
hitting 10,000 steps at least twice a week, and then up to 5 times per week.
However, I have now hit a snag because of a foot problem - I have neuromas
on the soles of my feet, plantar fasciitis, metatarsalgia,arthritis in my
feet and ankles, plus calcaneal heel spurs. My feet swell in the heat
because of the humidity and this has caused me to have a lot of foot pain.
Last night I felt as though my feet were being prodded by a cattle prod. I
have backed off with the walking but I am still doing very well with the
steps.

I believe that exercise and stretching is the key to handling the pain of
the arthritis. We need to have strong muscles and ligaments because they are
working so hard to protect our bones. This is why I am glad that I finally
made the move to take on hydrotherapy.

MaggieinOz

-------Original Message-------

From: kellie776
Date: 31/01/2007 2:47:38 PM
To: Spondyville@yahoogroups.com<mailto:Spondyville@yahoogroups.com>
Subject: [Spondyville] new member also

hi! i have never joined any kind of online group before, but i have
been reading posts from this website for a couple weeks now, and it
has compelled me to join. for many reasons! one, to thank all of
you...just sharing your stories and experiences and words of support
really do help people like me who have been recently diagonosed (but
long time suffering) with AS....And, also i wanted to join to
hopefully offer the same support i can to others who are going through
the same thing....newly diagnosed.
I have to say, that my pain actually being given a name and a possible
treatment made me estatic! i know it's not something you WANT to have,
but I WANTED to know what i have been suffering with for almost 16
years or so. I cried the first few times i read other posts, because
it was the first time i found other people who FELT the same way I
did/do. Physically and emotionally. mine started with enormous back
pain, lower back (l5, s1) and my ortho wanted to do a spinal fusion.
He is still convinced i need one. ??!! (based on several discograms.)
I had epi-blocks, injections, and have been on every med known to Pain
Management and Orthopedics. Then it started in my mid back. they found
4 other degenerative discs. then the pain started in my neck. (they
found cervical and thoracic degenerative discs) My ortho said that it
was just stress from having two boys. yeah. I switched to a
neurologist, who said he thought it was systemic. the discs weren't
bad enough to cause me the pain i had. Then my knee and righ hand
followed. I didn't want to tell anyone about the newest points of pain
because i feared all my friends would think i was a hypochondriac. I
found a great rheumotologist. He has actually written articles on AS
for WEbMD. I discovered that my father had spondyorth. ( i can't
spell that word)and he has a "bamboo spine" but I am negative in the
gene.
Finally my rheum. did a mri on my sac. joints and found "wear and
tear" (no fusion yet) but i did have a high sedimentation rate. I had
several blood tests, chest xrays, etc, and finally was prescribed
Enbrel. i can't wait to start. EVERY day is a struggle. My right hand
hurts so much I can't tie my sons shoes or put on his soccer clothes.
My hips CONSTANTLY ACHE. My muschles feel bruised! It is all so wierd
and overwhelming, all the different symptoms.
Enough about me, i just wanted to thank everyone here for helping me
through this rough emotional discovery phase. I try not to complain
about the pain, that's the HARDEST part i think. I am going to take
ya'lls opinion and start the water exercise. it is encouraging to see
that you have benefited from it.
thank you all for taking time to share and help.
sincerely,
kellie

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Pia~

Once again I am going to respond (even though I am not Spenser23). Have you
accessed the SAA website? The physician referral list Spenser referred to is
posted on the SAA website. You can access it here:
http://www.stopAS.org<http://www.stopas.org/> or
http://www.spondylitis.org<http://www.spondylitis.org/> The SAA website is a
GREAT resource.

Tyler

   ----- Original Message -----
   From: Olympia Chagouris<mailto:ochagouris@...>
   To: Spondyville@yahoogroups.com<mailto:Spondyville@yahoogroups.com>
   Sent: Wednesday, January 31, 2007 6:42 AM
   Subject: Re: [Spondyville] Re: New Member


   Hey Spencer23...

   I noticed that you made reference to SAA physician referral list. Would you by
any chance know how to find a rheumy in my area that specializes/focuses on
spondyloarthropathy?? I've read several journal articles by docs that have
particular interest in that area, so my assumption is that there may be others
around that are very well read on AS. When I venture out for my second opinion,
I'd like to do it with someone that I know is very familiar with AS and the
other Spondyloarthropathies. Any ideas?

   Pia

   spenser23as <no_reply@yahoogroups.com<mailto:no_reply@yahoogroups.com>> wrote:
   Hi Dan. Welcome to Spondyville. I know of only two AS support groups
   in Michigan. One is in Detroit and one is in Zeeland. I can give you
   the contact names and email addresses for these groups. Perhaps one of
   the members of one of those groups knows someone or a rheumy in the U.P.
   The groups are sponsored by the SAA. The leader of the Detroit group
   is Laura, you can email her at:
mrussell.21@...<mailto:mrussell.21@...> The leader of
   the Zeeland group is Scott and you can email him at:
smay@...<mailto:smay@...>
   I found a number of physicians from Michigan on the SAA physician
   referral list but I'm not sure which, if any are in the U.P. I will
   send you the list if you are interested. Contact me by email at
   Spenser23@...<mailto:Spenser23@...>

   Spenser23as

   ---------------------------------
   No need to miss a message. Get email on-the-go
   with Yahoo! Mail for Mobile. Get started.

   [Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Hi Maggie~

I just had a thought. You mention that you do not use the biologics which is
fine...we all have to decide what's best for ourselves. I do get concerned,
though, when I hear people say they use Celebrex and other such meds "when I
need it". These meds are not like aspirin or pain relievers--many of them are
most effective with a ramping up period. That is, they work most effectively
when taken on a regular schedule rather than intermittently. Some of them may
not reach full effectiveness until taken regularly for several weeks.

I do not want to sound discouraging to you, but it may be worth giving this idea
a second thought. Perhaps--in the long run--you would have fewer problems, or
less severe outcomes if you were to use an AS medication on a more regular
basis.

Just a thought...

Tyler
   ----- Original Message -----
   From: Maggie<mailto:maohearn@...>
   To: Spondyville@yahoogroups.com<mailto:Spondyville@yahoogroups.com>
   Sent: Tuesday, January 30, 2007 11:28 PM
   Subject: Re: [Spondyville] new member also


   Hi Kellie,

   Welcome to Spondyville. I understand what you mean about the relief to
   finally discover the real cause of the pain. I can relate to the time that
   it has taken to get that dx. I was diagnosed for the first time last March,
   even though AS was suspected in 1988. It was not until a bone scan showed up
   the extent of my arthritis that I started to push to get a better diagnosis
   than fibromyalgia. I am blessed to have a very patient GP who does not think
   that I am a hypochondriac, is aware that I check out information on the
   Internet and is very supportive. My husband, on the other hand has accused
   me of being a hypochondriac because I use "big fancy words".

   Every time I tried to exercise I would strike a new problem that served to
   make me feel depressed. I have managed to fall out of a lift, fall down
   stairs and had all manner of accidents. A car accident in 1981 left me with
   a severe whiplash injury, and I have never fully recovered. Other injuries
   from the workplace followed, including falling out of the lift. Then last
   November I lost my balance, ended up slamming into the edge of my swimming
   pool, and have fractured my coccyx for the second time.

   Now for the good news because I am managing to handle my situation without
   the necessity for Enbrel, Humira or Remicade. I take Celebrex when I need it
   for example to reduce the inflammation that resulted from my injury. My
   doctor pushed and pushed to get me to take exercise seriously, and finally
   he succeeded in getting me to take on hydrotherapy. I wish that I had
   started 5 years ago. I have been doing very well with the healing of my
   coccyx because I have been consistent with hydrotherapy, plus I have been
   walking, walking and walking. As soon as I had my new orthotics I took off
   and my steps (which I measure with a pedometer) increased so that I started
   hitting 10,000 steps at least twice a week, and then up to 5 times per week.
   However, I have now hit a snag because of a foot problem - I have neuromas
   on the soles of my feet, plantar fasciitis, metatarsalgia,arthritis in my
   feet and ankles, plus calcaneal heel spurs. My feet swell in the heat
   because of the humidity and this has caused me to have a lot of foot pain.
   Last night I felt as though my feet were being prodded by a cattle prod. I
   have backed off with the walking but I am still doing very well with the
   steps.

   I believe that exercise and stretching is the key to handling the pain of
   the arthritis. We need to have strong muscles and ligaments because they are
   working so hard to protect our bones. This is why I am glad that I finally
   made the move to take on hydrotherapy.

   MaggieinOz

   -------Original Message-------

   From: kellie776
   Date: 31/01/2007 2:47:38 PM
   To: Spondyville@yahoogroups.com<mailto:Spondyville@yahoogroups.com>
   Subject: [Spondyville] new member also

   hi! i have never joined any kind of online group before, but i have
   been reading posts from this website for a couple weeks now, and it
   has compelled me to join. for many reasons! one, to thank all of
   you...just sharing your stories and experiences and words of support
   really do help people like me who have been recently diagonosed (but
   long time suffering) with AS....And, also i wanted to join to
   hopefully offer the same support i can to others who are going through
   the same thing....newly diagnosed.
   I have to say, that my pain actually being given a name and a possible
   treatment made me estatic! i know it's not something you WANT to have,
   but I WANTED to know what i have been suffering with for almost 16
   years or so. I cried the first few times i read other posts, because
   it was the first time i found other people who FELT the same way I
   did/do. Physically and emotionally. mine started with enormous back
   pain, lower back (l5, s1) and my ortho wanted to do a spinal fusion.
   He is still convinced i need one. ??!! (based on several discograms.)
   I had epi-blocks, injections, and have been on every med known to Pain
   Management and Orthopedics. Then it started in my mid back. they found
   4 other degenerative discs. then the pain started in my neck. (they
   found cervical and thoracic degenerative discs) My ortho said that it
   was just stress from having two boys. yeah. I switched to a
   neurologist, who said he thought it was systemic. the discs weren't
   bad enough to cause me the pain i had. Then my knee and righ hand
   followed. I didn't want to tell anyone about the newest points of pain
   because i feared all my friends would think i was a hypochondriac. I
   found a great rheumotologist. He has actually written articles on AS
   for WEbMD. I discovered that my father had spondyorth. ( i can't
   spell that word)and he has a "bamboo spine" but I am negative in the
   gene.
   Finally my rheum. did a mri on my sac. joints and found "wear and
   tear" (no fusion yet) but i did have a high sedimentation rate. I had
   several blood tests, chest xrays, etc, and finally was prescribed
   Enbrel. i can't wait to start. EVERY day is a struggle. My right hand
   hurts so much I can't tie my sons shoes or put on his soccer clothes.
   My hips CONSTANTLY ACHE. My muschles feel bruised! It is all so wierd
   and overwhelming, all the different symptoms.
   Enough about me, i just wanted to thank everyone here for helping me
   through this rough emotional discovery phase. I try not to complain
   about the pain, that's the HARDEST part i think. I am going to take
   ya'lls opinion and start the water exercise. it is encouraging to see
   that you have benefited from it.
   thank you all for taking time to share and help.
   sincerely,
   kellie





   [Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Welcome to both Dan and Kellie! Although I'm sorry you have AS, I'm very glad
you found us. There are a lot of us here, and as others have said, we are here
to help support one another. Sometimes it's with humor; at other times it's a
virtual kick in the seat that gets us moving forward. just kidding

At any rate, I want to comment about the hands and AS. I've had AS a long time,
and my hands and wrists are affected. Even though I am grateful I can still use
them, at times I find it frustrating and a bit bewildering to have such
ill-behaving appendages!

I'm not as vocal on the message board as I've been in the past, but I do read
the posts daily and comment from time to time. Please feel free to continue to
post...ask questions, offer suggestions, vent and laugh with the rest of us.

Tyler

   ----- Original Message -----
   From: Daniel James Blondeau<mailto:djblondeau@...>
   To: Spondyville@yahoogroups.com<mailto:Spondyville@yahoogroups.com>
   Sent: Tuesday, January 30, 2007 7:58 PM
   Subject: Re: [Spondyville] new member also


   Kellie,

   I am a new member of today as well and read your letter. You mentioned your
   hands hurting. My hands and wrists bother me as well yet my doctor told me
   it has nothing to do with AS. Has anyone else heard of this. I am new to AS
   and have not read anything supporting hthe disease affesting hand and wrist.
   I have an appointment to see a Rheumy in March, it's the soonest I can get
   in. This is important to me, my wife and I have been married three years and
   trying to plan when to have kids. i don't want to wait so long that I can't
   hold my child without pain. I am trying to work past the initial state of
   thinking my life is ruined because of AS.

   Thank you,
   Dan

   -----Original Message-----
   From: kellie776 <no_reply@yahoogroups.com<mailto:no_reply@yahoogroups.com>>
   To: Spondyville@yahoogroups.com<mailto:Spondyville@yahoogroups.com>
   Date: Wed, 31 Jan 2007 03:47:35 -0000
   Subject: [Spondyville] new member also

   hi! i have never joined any kind of online group before, but i have
   been reading posts from this website for a couple weeks now, and it
   has compelled me to join. for many reasons! one, to thank all of
   you...just sharing your stories and experiences and words of support
   really do help people like me who have been recently diagonosed (but
   long time suffering) with AS....And, also i wanted to join to
   hopefully offer the same support i can to others who are going through
   the same thing....newly diagnosed.
   I have to say, that my pain actually being given a name and a possible
   treatment made me estatic! i know it's not something you WANT to have,
   but I WANTED to know what i have been suffering with for almost 16
   years or so. I cried the first few times i read other posts, because
   it was the first time i found other people who FELT the same way I
   did/do. Physically and emotionally. mine started with enormous back
   pain, lower back (l5, s1) and my ortho wanted to do a spinal fusion.
   He is still convinced i need one. ??!! (based on several discograms.)
   I had epi-blocks, injections, and have been on every med known to Pain
   Management and Orthopedics. Then it started in my mid back. they found
   4 other degenerative discs. then the pain started in my neck. (they
   found cervical and thoracic degenerative discs) My ortho said that it
   was just stress from having two boys. yeah. I switched to a
   neurologist, who said he thought it was systemic. the discs weren't
   bad enough to cause me the pain i had. Then my knee and righ hand
   followed. I didn't want to tell anyone about the newest points of pain
   because i feared all my friends would think i was a hypochondriac. I
   found a great rheumotologist. He has actually written articles on AS
   for WEbMD. I discovered that my father had spondyorth. ( i can't
   spell that word)and he has a "bamboo spine" but I am negative in the
   gene.
   Finally my rheum. did a mri on my sac. joints and found "wear and
   tear" (no fusion yet) but i did have a high sedimentation rate. I had
   several blood tests, chest xrays, etc, and finally was prescribed
   Enbrel. i can't wait to start. EVERY day is a struggle. My right hand
   hurts so much I can't tie my sons shoes or put on his soccer clothes.
   My hips CONSTANTLY ACHE. My muschles feel bruised! It is all so wierd
   and overwhelming, all the different symptoms.
   Enough about me, i just wanted to thank everyone here for helping me
   through this rough emotional discovery phase. I try not to complain
   about the pain, that's the HARDEST part i think. I am going to take
   ya'lls opinion and start the water exercise. it is encouraging to see
   that you have benefited from it.
   thank you all for taking time to share and help.
   sincerely,
   kellie

   [Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

maggie:

   I thought you were new to Spondyville...you've been here a year and I send you
a "welcome"...haha!!!

   Pia

Maggie <maohearn@...> wrote:
           Hi Maria,

Welcome to Spondyville. I have been frequenting this town for almost a year.
I received my dx for AS last year.

A word of warning about Ibuprofen. This is a NSAID and should always be
taken with food, and you must stay within the recommended limits for the
medication. If you fail to take this medication with a full stomach then you
really do risk getting ulcers.

As a woman you might find that you do not progress as fast as a man with AS
and if you have had the disease for 30+ years then you might be less likely
to progress. However, the aim is to make sure that if you do continue to
fuse that you are upright and not bent.

If you have access to a hydrotherapy pool then I do recommend that
hydrotherapy is added to your routine.

MaggieinOz

-------Original Message-------

From: mdbritten
Date: 1/02/2007 3:22:36 AM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] I'm New Too! Sort Of...

Hello all! I joined the group a while ago, but just got a chance to
post. (I chase my 2 year old son around all day). I've had AS for 30+
years, since age 7 as I can remember, diagnosed around year 2000ish? I
have somewhat mild pain, at least I think. I'm fused in the neck and
SI, limited hip movement, knees, feet, blah blah, blah. I've gone
through a variety of drug regimes over many years, but have settled
back into OTC Ibuprofin for the last 7 years or so. I lead a fairly
normal life and try to keep up my exercise and stretching(but can
always do more). Still have pain though and I'm really worried about
progression. I'm wondering how and when you decide to take a step up
to Enbrel, Remicade or other?





[Non-text portions of this message have been removed]






---------------------------------
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[Non-text portions of this message have been removed]

Hi Maria,

Welcome to Spondyville. I have been frequenting this town for almost a year.
I received my dx for AS last year.

A word of warning about Ibuprofen. This is a NSAID and should always be
taken with food, and you must stay within the recommended limits for the
medication. If you fail to take this medication with a full stomach then you
really do risk getting ulcers.

As a woman  you might find that you do not progress as fast as a man with AS
and if you have had the disease for 30+ years then you might be less likely
to progress. However, the aim is to make sure that if you do continue to
fuse that you are upright and not bent.

If you have access to a hydrotherapy pool then I do recommend that
hydrotherapy is added to your routine.

MaggieinOz

-------Original Message-------

From: mdbritten
Date: 1/02/2007 3:22:36 AM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] I'm New Too! Sort Of...

Hello all! I joined the group a while ago, but just got a chance to
post. (I chase my 2 year old son around all day). I've had AS for 30+
years, since age 7 as I can remember, diagnosed around year 2000ish? I
have somewhat mild pain, at least I think. I'm fused in the neck and
SI, limited hip movement, knees, feet, blah blah, blah. I've gone
through a variety of drug regimes over many years, but have settled
back into OTC Ibuprofin for the last 7 years or so. I lead a fairly
normal life and try to keep up my exercise and stretching(but can
always do more). Still have pain though and I'm really worried about
progression. I'm wondering how and when you decide to take a step up
to Enbrel, Remicade or other?





[Non-text portions of this message have been removed]

Daniel,

So can we call you Yooper Dan?  I graduated from Michigan Tech in Houghton, MI,
so I am very familiar with the UP.

I am a 41 year old male with AS, diagnosed about 16 years ago.  My initial pain
was lower back and hip.  It was pretty severe for a couple of years, when I was
28 to 31.  Stubbing my toe, or sneezing was the worst thing, it would literally
take my breath away.  Originally, I was taking Naprosyn for pain treatment and
Carafate to keep my stomach in tact from the Naprosyn.  Along the way I ended up
with Ulcerative Colitis.  My doctor at the University of Iowa basically told me
I needed to change my lifestyle and exercise a lot more and get off the
Naprosyn.  (That and I was working about 80 hours+ a week.)  We were getting
ready to have children at the time so we decided to use Imuran (Azathioprine) as
the treatment for the UC.  It was showing some promise as an AS treatment, and
had limited interference on the reproductive side.  I have been on the Imuran
for approximately 12 years, and I took the exercise advise to heart.  (I changed
jobs too.)

We had our first child when I was 29 and I had difficulty picking him up out of
his crib due to the pain, while bending forward.  As I increased the exercise
and stayed on the Imuran the pain started to subside, substantially.  Probably
due to fusing of the affected areas.

Currently, I have very little pain, the fusing has slowly continued.  I do have
a limited range of motion with my neck.  Looking up is really tough.  I can tell
a direct correlation on my exercise routine to neck and back stiffness and how
sore I get.  The harder I exercise, the better I feel.  So I work a modified
schedule where I take an hour and a half lunch, and do light weights and heavy
aerobics...spinning class is the best.   I feel very good and have few
limitations.  I still give the kids piggy back rides, etc. and enjoy my life.  I
did give up hockey league as a good check would probably break my neck.

So my particular experience has been a few tough years, and then the disease
stabilized and most of the severe pain diminished.  I did talk, last year, at
length with a local rheumy here in Chicago that has a very good reputation,
about TNF blockers.  Her thoughts, in my case, were that with minimal pain and
other issues, the TNF blockers would not be a great choice.  The Imuran was
doing a very good job as I have not had a UC flare in 9 years and it does more
than likely help slow the AS.  The other TNF blocker side effects from of immune
system suppression, etc. could outweigh the benefits to myself.  The immune
suppression issue is pretty big because I travel internationally frequently in
my job.  The Imuran already has enough suppression issues as it is.

Hope that helps give you my perspective.  I have never actually met another
person with AS outside of the SAA conference in Chicago a year or so ago.  So
having relatives with it would be interesting.  My sister does have the related
psoriatic arthritis.

Brian

---- Daniel James Blondeau <djblondeau@...> wrote:
> Kellie,
>
> I am a new member of today as well and read your letter. You mentioned your
> hands hurting. My hands and wrists bother me as well yet my doctor told me
> it has nothing to do with AS. Has anyone else heard of this. I am new to AS
> and have not read anything supporting hthe disease affesting hand and wrist.
> I have an appointment to see a Rheumy in March, it's the soonest I can get
> in. This is important to me, my wife and I have been married three years and
> trying to plan when to have kids. i don't want to wait so long that I can't
> hold my child without pain. I am trying to work past the initial state of
> thinking my life is ruined because of AS.
>
> Thank you,
> Dan
>
> -----Original Message-----
> From: kellie776 <no_reply@yahoogroups.com>
> To: Spondyville@yahoogroups.com
> Date: Wed, 31 Jan 2007 03:47:35 -0000
> Subject: [Spondyville] new member also
>
> hi! i have never joined any kind of online group before, but i have
> been reading posts from this website for a couple weeks now, and it
> has compelled me to join. for many reasons! one, to thank all of
> you...just sharing your stories and experiences and words of support
> really do help people like me who have been recently diagonosed (but
> long time suffering) with AS....And, also i wanted to join to
> hopefully offer the same support i can to others who are going through
> the same thing....newly diagnosed.
> I have to say, that my pain actually being given a name and a possible
> treatment made me estatic! i know it's not something you WANT to have,
> but I WANTED to know what i have been suffering with for almost 16
> years or so. I cried the first few times i read other posts, because
> it was the first time i found other people who FELT the same way I
> did/do. Physically and emotionally. mine started with enormous back
> pain, lower back (l5, s1) and my ortho wanted to do a spinal fusion.
> He is still convinced i need one. ??!! (based on several discograms.)
> I had epi-blocks, injections, and have been on every med known to Pain
> Management and Orthopedics. Then it started in my mid back. they found
> 4 other degenerative discs. then the pain started in my neck. (they
> found cervical and thoracic degenerative discs) My ortho said that it
> was just stress from having two boys. yeah. I switched to a
> neurologist, who said he thought it was systemic. the discs weren't
> bad enough to cause me the pain i had. Then my knee and righ hand
> followed. I didn't want to tell anyone about the newest points of pain
> because i feared all my friends would think i was a hypochondriac. I
> found a great rheumotologist. He has actually written articles on AS
> for WEbMD. I discovered that my father had spondyorth. ( i can't
> spell that word)and he has a "bamboo spine" but I am negative in the
> gene.
> Finally my rheum. did a mri on my sac. joints and found "wear and
> tear" (no fusion yet) but i did have a high sedimentation rate. I had
> several blood tests, chest xrays, etc, and finally was prescribed
> Enbrel. i can't wait to start. EVERY day is a struggle. My right hand
> hurts so much I can't tie my sons shoes or put on his soccer clothes.
> My hips CONSTANTLY ACHE. My muschles feel bruised! It is all so wierd
> and overwhelming, all the different symptoms.
> Enough about me, i just wanted to thank everyone here for helping me
> through this rough emotional discovery phase. I try not to complain
> about the pain, that's the HARDEST part i think. I am going to take
> ya'lls opinion and start the water exercise. it is encouraging to see
> that you have benefited from it.
> thank you all for taking time to share and help.
> sincerely,
> kellie
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

That's a good question,,,but if I was you, I would talk to your doctor
or specialists (Rhuemy) and ask them if you need that type of
medication. If your blood tests show that your arthritides are low, you
may not need to do too much. But I am not a doctor so, I would check
with them! The TNF Blockers such as remicade will slow or stop the
progression of the disease and lower the inflammation. But if you have
very mild inflammation, then they may give you a drug such as
Methrotrexate, which kind of does the same, but on a milder approach.
My suggestion is to ask your doctors if you need it and maybe get a
blood test to show how much inflammtion in your system! TTYL:) Phil:)

--- In Spondyville@yahoogroups.com, "mdbritten" <mariabritten@...>
wrote:
>
> Hello all! I joined the group a while ago, but just got a chance to
> post. (I chase my 2 year old son around all day). I've had AS for 30+
> years, since age 7 as I can remember, diagnosed around year 2000ish?
I
> have somewhat mild pain, at least I think. I'm fused in the neck and
> SI, limited hip movement, knees, feet, blah blah, blah. I've gone
> through a variety of drug regimes over many years, but have settled
> back into OTC Ibuprofin for the last 7 years or so. I lead a fairly
> normal life and try to keep up my exercise and stretching(but can
> always do more).  Still have pain though and I'm really worried about
> progression.  I'm wondering how and when you decide to take a step up
> to Enbrel, Remicade or other?
>

Hello Maria,

I second that...when you decide to take a step up
to Enbrel, Remicade or other?

Dan

-----Original Message-----
From: "mdbritten" <mariabritten@...>
To: Spondyville@yahoogroups.com
Date: Wed, 31 Jan 2007 16:18:09 -0000
Subject: [Spondyville] I'm New Too! Sort Of...

Hello all! I joined the group a while ago, but just got a chance to
post. (I chase my 2 year old son around all day). I've had AS for 30+
years, since age 7 as I can remember, diagnosed around year 2000ish? I
have somewhat mild pain, at least I think. I'm fused in the neck and
SI, limited hip movement, knees, feet, blah blah, blah. I've gone
through a variety of drug regimes over many years, but have settled
back into OTC Ibuprofin for the last 7 years or so. I lead a fairly
normal life and try to keep up my exercise and stretching(but can
always do more). Still have pain though and I'm really worried about
progression. I'm wondering how and when you decide to take a step up
to Enbrel, Remicade or other?





[Non-text portions of this message have been removed]

Hello all! I joined the group a while ago, but just got a chance to
post. (I chase my 2 year old son around all day). I've had AS for 30+
years, since age 7 as I can remember, diagnosed around year 2000ish?  I
have somewhat mild pain, at least I think. I'm fused in the neck and
SI, limited hip movement, knees, feet, blah blah, blah. I've gone
through a variety of drug regimes over many years, but have settled
back into OTC Ibuprofin for the last 7 years or so. I lead a fairly
normal life and try to keep up my exercise and stretching(but can
always do more).  Still have pain though and I'm really worried about
progression.  I'm wondering how and when you decide to take a step up
to Enbrel, Remicade or other?

Hi Kellie...welcome!!  Glad you are here.

   Pia

kellie776 <no_reply@yahoogroups.com> wrote:
           hi! i have never joined any kind of online group before, but i have
been reading posts from this website for a couple weeks now, and it
has compelled me to join. for many reasons! one, to thank all of
you...just sharing your stories and experiences and words of support
really do help people like me who have been recently diagonosed (but
long time suffering) with AS....And, also i wanted to join to
hopefully offer the same support i can to others who are going through
the same thing....newly diagnosed.
I have to say, that my pain actually being given a name and a possible
treatment made me estatic! i know it's not something you WANT to have,
but I WANTED to know what i have been suffering with for almost 16
years or so. I cried the first few times i read other posts, because
it was the first time i found other people who FELT the same way I
did/do. Physically and emotionally. mine started with enormous back
pain, lower back (l5, s1) and my ortho wanted to do a spinal fusion.
He is still convinced i need one. ??!! (based on several discograms.)
I had epi-blocks, injections, and have been on every med known to Pain
Management and Orthopedics. Then it started in my mid back. they found
4 other degenerative discs. then the pain started in my neck. (they
found cervical and thoracic degenerative discs) My ortho said that it
was just stress from having two boys. yeah. I switched to a
neurologist, who said he thought it was systemic. the discs weren't
bad enough to cause me the pain i had. Then my knee and righ hand
followed. I didn't want to tell anyone about the newest points of pain
because i feared all my friends would think i was a hypochondriac. I
found a great rheumotologist. He has actually written articles on AS
for WEbMD. I discovered that my father had spondyorth. ( i can't
spell that word)and he has a "bamboo spine" but I am negative in the
gene.
Finally my rheum. did a mri on my sac. joints and found "wear and
tear" (no fusion yet) but i did have a high sedimentation rate. I had
several blood tests, chest xrays, etc, and finally was prescribed
Enbrel. i can't wait to start. EVERY day is a struggle. My right hand
hurts so much I can't tie my sons shoes or put on his soccer clothes.
My hips CONSTANTLY ACHE. My muschles feel bruised! It is all so wierd
and overwhelming, all the different symptoms.
Enough about me, i just wanted to thank everyone here for helping me
through this rough emotional discovery phase. I try not to complain
about the pain, that's the HARDEST part i think. I am going to take
ya'lls opinion and start the water exercise. it is encouraging to see
that you have benefited from it.
thank you all for taking time to share and help.
sincerely,
kellie






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[Non-text portions of this message have been removed]

Hey Spencer23...

   I noticed that you made reference to SAA physician referral list.  Would you
by any chance know how to find a rheumy in my area that specializes/focuses on
spondyloarthropathy??  I've read several journal articles by docs that have
particular interest in that area, so my assumption is that there may be others
around that are very well read on AS.  When I venture out for my second opinion,
I'd like to do it with someone that I know is very familiar with AS and the
other Spondyloarthropathies. Any ideas?

   Pia

spenser23as <no_reply@yahoogroups.com> wrote:
           Hi Dan. Welcome to Spondyville. I know of only two AS support groups
in Michigan. One is in Detroit and one is in Zeeland. I can give you
the contact names and email addresses for these groups. Perhaps one of
the members of one of those groups knows someone or a rheumy in the U.P.
The groups are sponsored by the SAA. The leader of the Detroit group
is Laura, you can email her at: mrussell.21@... The leader of
the Zeeland group is Scott and you can email him at: smay@...
I found a number of physicians from Michigan on the SAA physician
referral list but I'm not sure which, if any are in the U.P. I will
send you the list if you are interested. Contact me by email at
Spenser23@...

Spenser23as






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Hi Kellie,

Welcome to Spondyville. I understand what you mean about the relief to
finally discover the real cause of the pain. I can relate to the time that
it has taken to get that dx. I was diagnosed for the first time last March,
even though AS was suspected in 1988. It was not until a bone scan showed up
the extent of my arthritis that I started to push to get a better diagnosis
than fibromyalgia. I am blessed to have a very patient GP who does not think
that I am a hypochondriac, is aware that I check out information on the
Internet and is very supportive. My husband, on the other hand has accused
me of being a hypochondriac because I use "big fancy words".

Every time I tried to exercise I would strike a new problem that served to
make me feel depressed. I have managed to fall out of a lift, fall down
stairs and had all manner of accidents. A car accident in 1981 left me with
a severe whiplash injury, and I have never fully recovered. Other injuries
from the workplace followed, including falling out of the lift. Then last
November I lost my balance, ended up slamming into the edge of my swimming
pool, and have fractured my coccyx for the second time.

Now for the good news because I am managing to handle my situation without
the necessity for Enbrel, Humira or Remicade. I take Celebrex when I need it
  for example to reduce the inflammation that resulted from my injury. My
doctor pushed and pushed to get me to take exercise seriously, and finally
he succeeded in getting me to take on hydrotherapy. I wish that I had
started 5 years ago. I have been doing very well with the healing of my
coccyx because I have been consistent with hydrotherapy, plus I have been
walking, walking and walking. As soon as I had my new orthotics I took off
and my steps (which I measure with a pedometer) increased so that I started
hitting 10,000 steps at least twice a week, and then up to 5 times per week.
However, I have now hit a snag because of a foot problem - I have neuromas
on the soles of my feet, plantar fasciitis, metatarsalgia,arthritis in my
feet and ankles, plus calcaneal heel spurs. My feet swell in the heat
because of the humidity and this has caused me to have a lot of foot pain.
Last night I felt as though my feet were being prodded by a cattle prod. I
have backed off with the walking but I am still doing very well with the
steps.

I believe that exercise and stretching is the key to handling the pain of
the arthritis. We need to have strong muscles and ligaments because they are
working so hard to protect our bones. This is why I am glad that I finally
made the move to take on hydrotherapy.

MaggieinOz

-------Original Message-------

From: kellie776
Date: 31/01/2007 2:47:38 PM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] new member also

hi! i have never joined any kind of online group before, but i have
been reading posts from this website for a couple weeks now, and it
has compelled me to join. for many reasons! one, to thank all of
you...just sharing your stories and experiences and words of support
really do help people like me who have been recently diagonosed (but
long time suffering) with AS....And, also i wanted to join to
hopefully offer the same support i can to others who are going through
the same thing....newly diagnosed.
I have to say, that my pain actually being given a name and a possible
treatment made me estatic! i know it's not something you WANT to have,
but I WANTED to know what i have been suffering with for almost 16
years or so. I cried the first few times i read other posts, because
it was the first time i found other people who FELT the same way I
did/do. Physically and emotionally. mine started with enormous back
pain, lower back (l5, s1) and my ortho wanted to do a spinal fusion.
He is still convinced i need one. ??!! (based on several discograms.)
I had epi-blocks, injections, and have been on every med known to Pain
Management and Orthopedics. Then it started in my mid back. they found
4 other degenerative discs. then the pain started in my neck. (they
found cervical and thoracic degenerative discs) My ortho said that it
was just stress from having two boys. yeah. I switched to a
neurologist, who said he thought it was systemic. the discs weren't
bad enough to cause me the pain i had. Then my knee and righ hand
followed. I didn't want to tell anyone about the newest points of pain
because i feared all my friends would think i was a hypochondriac. I
found a great rheumotologist. He has actually written articles on AS
for WEbMD. I discovered that my father had spondyorth. ( i can't
spell that word)and he has a "bamboo spine" but I am negative in the
gene.
Finally my rheum. did a mri on my sac. joints and found "wear and
tear" (no fusion yet) but i did have a high sedimentation rate. I had
several blood tests, chest xrays, etc, and finally was prescribed
Enbrel. i can't wait to start. EVERY day is a struggle. My right hand
hurts so much I can't tie my sons shoes or put on his soccer clothes.
My hips CONSTANTLY ACHE. My muschles feel bruised! It is all so wierd
and overwhelming, all the different symptoms.
Enough about me, i just wanted to thank everyone here for helping me
through this rough emotional discovery phase. I try not to complain
about the pain, that's the HARDEST part i think. I am going to take
ya'lls opinion and start the water exercise. it is encouraging to see
that you have benefited from it.
thank you all for taking time to share and help.
sincerely,
kellie





[Non-text portions of this message have been removed]

About the hands and wrists: I went to my specalists to get evaluated
and he looked at my hands and fingers and he was amazed to see all
the redness and swelling. I have Burstritis in my fingers and I have
wrist and hand pains All the time. My AS is really bad. I have
inflamation everywhere, and thats why I get bony growths like in my
hands and fingers. I have a fused spine too. Thats what AS does to to
you as you know. Thats WHy I say the biologics are the best way to
go,,,they block your immune system from attacking your joints and
will stop the joint gelling. :) Hope you get to feeling better and if
there is anything you need, just let me know, I just turned 30, so I
may be as help to you! See yah:)
                         Phil:)




--- In Spondyville@yahoogroups.com, "djblondea" <djblondeau@...>
wrote:
>
> Hello,
>
> My name is Dan. I am a 25yr old who was diagnosed with Spondylitis
just
> a few months ago. Spondylitis has a long and severe history in my
> family and I put off getting tested until recently, I was scared
didn't
> want to know. I have several cousins who have done nothing and let
> Spondylitis get the best of them; they're now frozen in place with
much
> pain. Having seen the hurt and damage my family members have gone
> through, I thought the worse. I have an appointment with a
> Rheumatologist to see exactly where I stand.
>
> I have not found anyone in my area that shares this fate. I live in
the
> Upper Peninsula of Michigan where doctors and specialist are hard
to
> come by. I am hoping this community will help me on my path.
>
> Thank you,
>
> Dan
>

Your story sounds alot like mine! But my S1 & S2 has been fused for
at least 4 years. I want to give you my opinion on that spinal
fusion. Yah know, I have had several SEVERE Sacroiliac Joint pains
and hip pains before my spine fused, after it fused there is hardly
no pain in my lower back at all. SO I am thinking the fusion that
your doctor wants to do would do a GREAT deal for you. I still get
that pain if I strain my back or if I have muscle spasms in my back,
Very painful, but I went to the ER and they gave me muscle relaxers
and Great pain releivers to cope with that as they approach. Yah
know,,,I cried too when I came to this site and I also was very
releived to have finally found why I had been hurting for several
years. I was happy to come hear to this site and find people and get
their opinions and supoort. THIS is the place to BE. I have been a
member for around a year or so. It still feels new to me, but I am
getting to know people on here. I wanted to also tell you that I know
where you are coming from on the hypochondriac thing. I convinced
myself that I am a hypochondriac at times,,and the REASON for it is
because we all get pains EVERYWHERE,,,like chest pains and knee pains
and sbdominal pains and ETC ETC.... AM I HAVING A HEART ATTACK OR
STROKE,,DO I HAVE A BLOOD CLOT IN MY ARM? OR MY LEG? YOU KNOW WHAT I
MEAN! :) But NOW, knowing that it is AS, and when I get those pains,
I always think AS first! I can't hardly tie my shoes. I can't bend
over to get anything off the floor. In Jan. 2005 I have applied for
disability benefits and I just had my hearing in the beginning of
Dec. 2006. I am still waiting for a decision. But recently I have
also started on Remicade (Infusions) and I am starting to feel much
better. I am actually thinking I can work again, but with my
disability decision in the air, I have to wait and MAKE SURE I can
work. Its still too early to tell. I would say if I would have gotten
Remicade A long time ago, I would be working NOW! Well, enough about
me, IF YOU NEED ANYONE TO TALK TO, JUST LET ME KNOW! EMAIL ME
mulkins98@...
                            Take care and I hope you get some relief!
                                            Phil:)





--- In Spondyville@yahoogroups.com, kellie776 <no_reply@...> wrote:
>
> hi! i have never joined any kind of online group before, but i have
> been reading posts from this website for a couple weeks now, and it
> has compelled me to join. for many reasons! one, to thank all of
> you...just sharing your stories and experiences and words of
support
> really do help people like me who have been recently diagonosed
(but
> long time suffering) with AS....And, also i wanted to join to
> hopefully offer the same support i can to others who are going
through
> the same thing....newly diagnosed.
> I have to say, that my pain actually being given a name and a
possible
> treatment made me estatic! i know it's not something you WANT to
have,
> but I WANTED to know what i have been suffering with for almost 16
> years or so.  I cried the first few times i read other posts,
because
> it was the first time i found other people who FELT the same way I
> did/do. Physically and emotionally. mine  started with enormous
back
> pain, lower back (l5, s1) and my ortho wanted to do a spinal
fusion.
> He is still convinced i need one. ??!! (based on several
discograms.)
> I had epi-blocks, injections, and have been on every med known to
Pain
> Management and Orthopedics. Then it started in my mid back. they
found
> 4 other degenerative discs. then the pain started in my neck. (they
> found cervical and thoracic degenerative discs) My ortho said that
it
> was just stress from having two boys. yeah. I switched to a
> neurologist, who said he thought it was systemic. the discs weren't
> bad enough to cause me the pain i had. Then my knee and righ hand
> followed. I didn't want to tell anyone about the newest points of
pain
> because i feared all my friends would think i was a hypochondriac.
I
> found a great rheumotologist. He has actually written articles on
AS
> for WEbMD. I discovered that  my father had spondyorth. ( i can't
> spell that word)and he has a "bamboo spine" but I am negative in
the
> gene.
> Finally my rheum. did a mri on my sac. joints and found "wear and
> tear" (no fusion yet) but i did have a high sedimentation rate. I
had
> several blood tests, chest xrays, etc, and finally was prescribed
> Enbrel. i can't wait to start. EVERY day is a struggle. My right
hand
> hurts so much I can't tie my sons shoes or put on his soccer
clothes.
> My hips CONSTANTLY ACHE. My muschles feel bruised! It is all so
wierd
> and overwhelming, all the different symptoms.
> Enough about me, i just wanted to thank everyone here for helping
me
> through this rough emotional discovery phase. I try not to complain
> about the pain, that's the HARDEST part i think. I am going to take
> ya'lls opinion and start the water exercise. it is encouraging to
see
> that you have benefited from it.
> thank you all for taking time to share and help.
> sincerely,
> kellie
>

Hi my name is Phil, im 29 years old. I have had AS for a while
but was just diagnosed in 2005. It took a long time to even know what
was wrong with me until I did alot of research on the internet and
finally went to a different family doctor and told him my other
doctor wasn't doing anything for me and I think I have AS. Well, he
eventually tested me and sent me to a Rhuemy and "Yup" Sure enough I
was diagnosed with it as well as Severe Osteoprosis. I was stiff
every morning and it lasted most of the day. I got some relief from
Celebrex. My Rhuemy told me most people get relief from TNF blockers,
which is Remicade, humira, Enbrel..(They actually slow or stop the
process of fusions and inflamation).. Well, it took me a long time to
convince myself to start the Biologics. I mean they are talking about
infusions and the price of them were outrageous and the side effects
is what I was really worried about. Of course, I got approved for
Patient Assistance through the drug company. But never did take the
infusions,,too scared to...But after a year and a half, I went to a
different Rhuemy and he was really scaring me with the track of my
disease. He said it could effect my lungs and heart eventually. So,
with support of the people of "SPondyville" I chose to go in and have
the infusion. Just let me tell you this, I FEEL 100% Better. I still
have some pain from sitting and standing but the stiffness and that
inflamation pain is hardly noticeable. Thanks to Remicade! I have had
only two injections. My future looks more brighter as long as I don't
have any complications. So, if you are to go to the Rheumy, I am sure
he/she will bring the biologics up, My opinion is to TAKE IT! Because
the TV Ads, don't lie about these products. They work amazingly! Some
people differ though so you just have to be cautious,,If you ever
need anyone to talk to,,,just email me! mulkins98@...
                              Good Luck!
                                Phil:)

Hi, Dan,
Welcome to the group.  I'm living in Chicago now, raised in WI, but my mom is
from Escanaba.  Beautiful country up there, but I know it is far from
specialists.  Wish I could help in that regard.  Have you looked around Green
Bay, Appleton, or Neenah?  They may be the closest.

djblondea <djblondeau@...> wrote:                                 
Hello,

  My name is Dan. I am a 25yr old who was diagnosed with Spondylitis just
  a few months ago. Spondylitis has a long and severe history in my
  family and I put off getting tested until recently, I was scared didn't
  want to know. I have several cousins who have done nothing and let
  Spondylitis get the best of them; they're now frozen in place with much
  pain. Having seen the hurt and damage my family members have gone
  through, I thought the worse. I have an appointment with a
  Rheumatologist to see exactly where I stand.

  I have not found anyone in my area that shares this fate. I live in the
  Upper Peninsula of Michigan where doctors and specialist are hard to
  come by. I am hoping this community will help me on my path.

  Thank you,

  Dan






---------------------------------
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[Non-text portions of this message have been removed]

Kellie, Welcome to Spondyville!  I'm glad you found us.  Most of us
know exactly how you feel.  Don't ever be afraid to come here and
vent.  It's one of the reasons we're here.


Spenser23as

Hi Dan. Welcome to Spondyville.  I know of only two AS support groups
in Michigan.  One is in Detroit and one is in Zeeland.  I can give you
the contact names and email addresses for these groups. Perhaps one of
the members of one of those groups knows someone or a rheumy in the U.P.
The groups are sponsored by the SAA.  The leader of the Detroit group
is Laura, you can email her at: mrussell.21@... The leader of
the Zeeland group is Scott and you can email him at: smay@...
I found a number of physicians from Michigan on the SAA physician
referral list but I'm not sure which, if any are in the U.P.  I will
send you the list if you are interested. Contact me by email at
Spenser23@...


Spenser23as

Dan,
when you mentioned your wrists hurting as well, that is also a symptom
of carpal tunnel syndrome. Next time you are at your Dr.'s you might
want him to perform a simple check to see if that could be the
problem. just a thought
My dr. says sometimes you can have "ticks and fleas"....multiple
problems, unrelated...
hope that helps

dan,
don't let AS hinder your decision to have kids at all. looking at your
childs sweet face and amazing little hands and feet will EASE your
pain! well, i'm exaggerating, but really, it HAS made it harder for me
to bee 100% involved, but it's amazing how your friends and family
rally to help you out on those really bad, immoblie days. And my kids
are the most amazing little bundles of joy and love to me. (when
theyre not pummeling each other.) ha
also, about the hands, I don't know about the AS connection. I have
heard that AS sometimes has side effects that distribute themselves to
ONE side of your body (not both), but my doctor really never confirmed
or denied the connection. I have seen a study where it says that 5% of
AS sufferers do have symptons in the joints of the hands.
I think that there is still a lot of room for interperation left up to
doctors with this disease. Unless they really keep themselves updated
on the very latest, they might still think it is a disease that only
affects males 20years old with the positive gene.
i'm a testament to everything opposite from that statement! :)
I hope you find relief. When i find something that works, i'll share.

Kellie,

I am a new member of today as well and read your letter. You mentioned your
hands hurting. My hands and wrists bother me as well yet my doctor told me
it has nothing to do with AS. Has anyone else heard of this. I am new to AS
and have not read anything supporting hthe disease affesting hand and wrist.
I have an appointment to see a Rheumy in March, it's the soonest I can get
in. This is important to me, my wife and I have been married three years and
trying to plan when to have kids. i don't want to wait so long that I can't
hold my child without pain. I am trying to work past the initial state of
thinking my life is ruined because of AS.

Thank you,
Dan

-----Original Message-----
From: kellie776 <no_reply@yahoogroups.com>
To: Spondyville@yahoogroups.com
Date: Wed, 31 Jan 2007 03:47:35 -0000
Subject: [Spondyville] new member also

hi! i have never joined any kind of online group before, but i have
been reading posts from this website for a couple weeks now, and it
has compelled me to join. for many reasons! one, to thank all of
you...just sharing your stories and experiences and words of support
really do help people like me who have been recently diagonosed (but
long time suffering) with AS....And, also i wanted to join to
hopefully offer the same support i can to others who are going through
the same thing....newly diagnosed.
I have to say, that my pain actually being given a name and a possible
treatment made me estatic! i know it's not something you WANT to have,
but I WANTED to know what i have been suffering with for almost 16
years or so. I cried the first few times i read other posts, because
it was the first time i found other people who FELT the same way I
did/do. Physically and emotionally. mine started with enormous back
pain, lower back (l5, s1) and my ortho wanted to do a spinal fusion.
He is still convinced i need one. ??!! (based on several discograms.)
I had epi-blocks, injections, and have been on every med known to Pain
Management and Orthopedics. Then it started in my mid back. they found
4 other degenerative discs. then the pain started in my neck. (they
found cervical and thoracic degenerative discs) My ortho said that it
was just stress from having two boys. yeah. I switched to a
neurologist, who said he thought it was systemic. the discs weren't
bad enough to cause me the pain i had. Then my knee and righ hand
followed. I didn't want to tell anyone about the newest points of pain
because i feared all my friends would think i was a hypochondriac. I
found a great rheumotologist. He has actually written articles on AS
for WEbMD. I discovered that my father had spondyorth. ( i can't
spell that word)and he has a "bamboo spine" but I am negative in the
gene.
Finally my rheum. did a mri on my sac. joints and found "wear and
tear" (no fusion yet) but i did have a high sedimentation rate. I had
several blood tests, chest xrays, etc, and finally was prescribed
Enbrel. i can't wait to start. EVERY day is a struggle. My right hand
hurts so much I can't tie my sons shoes or put on his soccer clothes.
My hips CONSTANTLY ACHE. My muschles feel bruised! It is all so wierd
and overwhelming, all the different symptoms.
Enough about me, i just wanted to thank everyone here for helping me
through this rough emotional discovery phase. I try not to complain
about the pain, that's the HARDEST part i think. I am going to take
ya'lls opinion and start the water exercise. it is encouraging to see
that you have benefited from it.
thank you all for taking time to share and help.
sincerely,
kellie





[Non-text portions of this message have been removed]

hi! i have never joined any kind of online group before, but i have
been reading posts from this website for a couple weeks now, and it
has compelled me to join. for many reasons! one, to thank all of
you...just sharing your stories and experiences and words of support
really do help people like me who have been recently diagonosed (but
long time suffering) with AS....And, also i wanted to join to
hopefully offer the same support i can to others who are going through
the same thing....newly diagnosed.
I have to say, that my pain actually being given a name and a possible
treatment made me estatic! i know it's not something you WANT to have,
but I WANTED to know what i have been suffering with for almost 16
years or so.  I cried the first few times i read other posts, because
it was the first time i found other people who FELT the same way I
did/do. Physically and emotionally. mine  started with enormous back
pain, lower back (l5, s1) and my ortho wanted to do a spinal fusion.
He is still convinced i need one. ??!! (based on several discograms.)
I had epi-blocks, injections, and have been on every med known to Pain
Management and Orthopedics. Then it started in my mid back. they found
4 other degenerative discs. then the pain started in my neck. (they
found cervical and thoracic degenerative discs) My ortho said that it
was just stress from having two boys. yeah. I switched to a
neurologist, who said he thought it was systemic. the discs weren't
bad enough to cause me the pain i had. Then my knee and righ hand
followed. I didn't want to tell anyone about the newest points of pain
because i feared all my friends would think i was a hypochondriac. I
found a great rheumotologist. He has actually written articles on AS
for WEbMD. I discovered that  my father had spondyorth. ( i can't
spell that word)and he has a "bamboo spine" but I am negative in the
gene.
Finally my rheum. did a mri on my sac. joints and found "wear and
tear" (no fusion yet) but i did have a high sedimentation rate. I had
several blood tests, chest xrays, etc, and finally was prescribed
Enbrel. i can't wait to start. EVERY day is a struggle. My right hand
hurts so much I can't tie my sons shoes or put on his soccer clothes.
My hips CONSTANTLY ACHE. My muschles feel bruised! It is all so wierd
and overwhelming, all the different symptoms.
Enough about me, i just wanted to thank everyone here for helping me
through this rough emotional discovery phase. I try not to complain
about the pain, that's the HARDEST part i think. I am going to take
ya'lls opinion and start the water exercise. it is encouraging to see
that you have benefited from it.
thank you all for taking time to share and help.
sincerely,
kellie

Hello Craig,

Good to hear from you. I live in Marquette, roughly 2 1/2 to 3 hours west of
Sault St. Marie. I am currently on Voltaren and a pain reliever but going to
a Rhuemy for the first time in March. There is only one Rhuemy specializing
in AS in a 6 hour radius so it takes time to get in. Luckily for me, sleep
hasn't been to tough yet. I keep visualizing my grandfather in his crippled
state and worry about how soon I'll be in the same condition. Need to stay
positive right?

I participate in both running and moutain bike races in my region and plan
to design as AS jersey to wear this year.

Thank you again for contacting me. Take care.

Dan




Hi there Dan! Welcome to Spondyville, virtual home of those of us that
suffer from AS. In my opinion, you made the right choice in getting tested.
There are treatments that help deal with AS, and help slow the progression
of the condition. Don't hesitate to tell the Rhuemy how you feel, and what
causes good and bad days, doing this will help him work out a treatment
path.
It might also help you to find a physical therapist that can help show you
stretches that will keep you mobile, and a bit more upright. Good posture is
also a must, even though it will hurt at times. I also find that I hurt less
when I sleep on my back, although it takes me about 30 minutes to be able to
lay with a pillow, and a lot longer time before I stretch out and get close
to having my head on the bed.
I have met only a few spondys here in the Central Arkansas area, and rarely
see any while I am traveling. Where about do you live in the UP? My wife's
step-Grandmother lives in Sault Saint Marie, we visited the area in the
summer of 2005, when it was one of the hottest summers on record. Nice area,
but I was told it would be cool, and it wasn't.
Good luck, and welcome!

Craig

djblondea < djblondeau@...> wrote:
Hello,

My name is Dan. I am a 25yr old who was diagnosed with Spondylitis just
a few months ago. Spondylitis has a long and severe history in my
family and I put off getting tested until recently, I was scared didn't
want to know. I have several cousins who have done nothing and let
Spondylitis get the best of them; they're now frozen in place with much
pain. Having seen the hurt and damage my family members have gone
through, I thought the worse. I have an appointment with a
Rheumatologist to see exactly where I stand.

I have not found anyone in my area that shares this fate. I live in the
Upper Peninsula of Michigan where doctors and specialist are hard to
come by. I am hoping this community will help me on my path.

Thank you,

Dan

Yahoo! Groups Links

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

dan,
    you have come to a good place. there are a lot of
knowledgable people here.  it can be fun too.  we all
need to laugh, even if it is at ourselves sometimes!!
   i'm sure that you will like it here, and fit in just
fine!

christi
--- djblondea <djblondeau@...> wrote:

> Hello,
>
> My name is Dan. I am a 25yr old who was diagnosed
> with Spondylitis just
> a few months ago. Spondylitis has a long and severe
> history in my
> family and I put off getting tested until recently,
> I was scared didn't
> want to know. I have several cousins who have done
> nothing and let
> Spondylitis get the best of them; they're now frozen
> in place with much
> pain. Having seen the hurt and damage my family
> members have gone
> through, I thought the worse. I have an appointment
> with a
> Rheumatologist to see exactly where I stand.
>
> I have not found anyone in my area that shares this
> fate. I live in the
> Upper Peninsula of Michigan where doctors and
> specialist are hard to
> come by. I am hoping this community will help me on
> my path.
>
> Thank you,
>
> Dan
>
>

Hi there Dan!  Welcome to Spondyville, virtual home of those of us that suffer
from AS. In my opinion,  you made the right choice in getting tested.  There are
treatments that help deal with AS, and help slow the progression of the
condition. Don't hesitate to tell the Rhuemy how you feel, and what causes good
and bad days, doing this will help him work out a treatment path.
     It might also help you to find a physical therapist that can help show you
stretches that will keep you mobile, and a bit more upright.  Good posture is
also a must, even though it will hurt at times.  I also find that I hurt less
when I sleep on my back, although it takes me about 30 minutes to be able to lay
with a pillow, and a lot longer time before I stretch out and get close to
having my head on the bed.
     I have met only a few spondys here in the Central Arkansas area, and rarely
see any while I am traveling. Where about do you live in the UP? My wife's
step-Grandmother lives in Sault Saint Marie, we visited the area in the summer
of 2005, when it was one of the hottest summers on record. Nice area, but I was
told it would be cool, and it wasn't.
     Good luck, and welcome!

   Craig

djblondea <djblondeau@...> wrote:
   Hello,

My name is Dan. I am a 25yr old who was diagnosed with Spondylitis just
a few months ago. Spondylitis has a long and severe history in my
family and I put off getting tested until recently, I was scared didn't
want to know. I have several cousins who have done nothing and let
Spondylitis get the best of them; they're now frozen in place with much
pain. Having seen the hurt and damage my family members have gone
through, I thought the worse. I have an appointment with a
Rheumatologist to see exactly where I stand.

I have not found anyone in my area that shares this fate. I live in the
Upper Peninsula of Michigan where doctors and specialist are hard to
come by. I am hoping this community will help me on my path.

Thank you,

Dan




Yahoo! Groups Links






[Non-text portions of this message have been removed]

Hi Dan:

   This community is amazing!!!  You'll find alot of support and wisdom from the
folks out here and I believe that everyone shares a common purpose...to share
knowledge, stories, laughter, advice, care and concern and good ol' support and
friendship!! Being a part of a community of people who care and understand has
made such a difference in my life and I am so glad I found them...I'm certain
that you will feel the same after getting to know these people.  I'm fairly new,
too and I meet terrific people here almost daily.  Welcome!!

   Pia

djblondea <djblondeau@...> wrote:
           Hello,

My name is Dan. I am a 25yr old who was diagnosed with Spondylitis just
a few months ago. Spondylitis has a long and severe history in my
family and I put off getting tested until recently, I was scared didn't
want to know. I have several cousins who have done nothing and let
Spondylitis get the best of them; they're now frozen in place with much
pain. Having seen the hurt and damage my family members have gone
through, I thought the worse. I have an appointment with a
Rheumatologist to see exactly where I stand.

I have not found anyone in my area that shares this fate. I live in the
Upper Peninsula of Michigan where doctors and specialist are hard to
come by. I am hoping this community will help me on my path.

Thank you,

Dan






---------------------------------
Looking for earth-friendly autos?
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[Non-text portions of this message have been removed]

Hello,

My name is Dan. I am a 25yr old who was diagnosed with Spondylitis just
a few months ago. Spondylitis has a long and severe history in my
family and I put off getting tested until recently, I was scared didn't
want to know. I have several cousins who have done nothing and let
Spondylitis get the best of them; they're now frozen in place with much
pain. Having seen the hurt and damage my family members have gone
through, I thought the worse. I have an appointment with a
Rheumatologist to see exactly where I stand.

I have not found anyone in my area that shares this fate. I live in the
Upper Peninsula of Michigan where doctors and specialist are hard to
come by. I am hoping this community will help me on my path.

Thank you,

Dan

If it were me, I would talk to my rheumy about anti-TNF meds. But that's just
me; I've had a lot of history with just about every classification of meds for
AS. You will have to make a decision based on what you feel is best for you.
There's nothing better than an informed decision, so research, research,
research.  Tyler
   ----- Original Message -----
   From: Olympia Chagouris<mailto:ochagouris@...>
   To: Spondyville@yahoogroups.com<mailto:Spondyville@yahoogroups.com>
   Sent: Monday, January 29, 2007 5:51 AM
   Subject: Re: [Spondyville] Re-post ing my quesions that seem to have gotten
lost


   Tyler:

   Thank you so much for your input!!! I really appreciate the time you spent
providing so much detail. I'm just curious...do you think , based on my results,
that I should push my rheumy to consider TNF's or DMARD's to slow down progress
at this point? He mentioned to me that he was going to consider Enbrel or Humira
based on my results, but like I said, he's been gone and I haven't spoken to him
about it yet. I don't want to take anything that I do not need to take
clinically, but I certainly want to halt any progression if I'm already showing
changes. I'd like to have your opinion...which, by the way, I know is "only an
opinion"!!! Spencer23 is always very careful with that...very smart! I'd
actually like to have Spencer's opinion on this as well. I'll be talking to my
rheumy probably tomorrow, so I hope you get this.

   Thanks so much again!!

   Pia

   Tyler Hyder <tylerchyder@...<mailto:tylerchyder@...>> wrote:
   Pia, Spenser23 gave you great feedback. Here's my input~
   1. your neck~ the foramina narrowing (stenosis) can, if serious enough, cause
not only neck pain but arm and shoulder pain as well. Surgery would likely not
be indicated unless you were experiencing some permanent or debilitating damage
to your spine. If the foramen narrows quite a lot, the pressure on your spinal
cord can cause the shoulder and arm pain I mentioned. I have experienced serious
damage to my spinal cord and thus underwent surgical correction nearly a year
ago. My neck is now surgically fused at C5-7. Although I have limited neck
mobility, the nerve pain in my shoulders, arms and hands has improved.
   2. Degenerative spurs are not uncommon even in those without AS. Mild spurring
will probably not cause need for surgery, but bears watching. Over time, AS can
change these bony outcroppings from spurs to actual fused bone between the
vertebrae. Early treatment with anti-TNF medications (such as Enbrel, Remicade,
Humira) may stop the progression of this damage, so I would advise speaking to
your rheumy about this.
   3. Spenser23 is right, plain radiographs generally will not show early SI
joint changes. Plain x-ray will not provide enough detail to show the subtle
changes that an MRI can reveal. They are also dependent on proper positioning,
so mild to moderate changes can be completely obliterated by the angle at which
the x-ray is taken.
   4. Grade 1 retrolisthesis at L5-S1 is considered mild, so if it does not cause
you too much pain, it probably does not need treatment, at least surgically. At
this point, building strong musculature in the low back and legs to support your
lower spine may be enough to relieve stress in that area. A good physical
therapy and a proper regular exercise program can go a long way in treating mild
retrolisthesis at L5-S1. The mechanics of a human upright posture actually
encourages this condition, particularly in women.

   Tyler

   ----- Original Message -----
   From: Olympia<mailto:ochagouris@...<mailto:ochagouris@...>>
   To:
Spondyville@yahoogroups.com<mailto:Spondyville@yahoogroups.com><mailto:Spondyvil\
le@yahoogroups.com<mailto:Spondyville@yahoogroups.com>>
   Sent: Sunday, January 28, 2007 7:12 AM
   Subject: [Spondyville] Re-post ing my quesions that seem to have gotten lost

   I was hoping to solicit spencer23as's opinion about my xray results.
   Of course, anyone else who has input...I'd be happy to hear!! I'm
   losing my mind because I haven't talked my results over yet w/ my
   rheumy. (He whas been away for the last few working days) Anyway,
   although I'm in nursing, this mumble-jumble means nothing to me. I'm
   not anywhere near involved in orthopedics, neurology etc.. Does
   anyone recognize this stuff?? Did anyone have similar 1st xray
   reults? Also, my rheumy took me off of all my OTC meds and put me on
   peroxicam last Tuesday and I am soooo miserable. My hips, lower back
   and soles of my feet are killing me!! I'm so tempted to take something
   in addition to the peroxicam, but I know I'm not supposed to.
   Anyway...any thoughts on this stuff would be appreciated to keep me
   sane until I can talk to the Doc. FYI: I know you guys aren't MD's,
   but many of you are way more knowledable than I am about this
   stuff!!! This is still so new to me.
   Xray Results:(1st set)

   1.Degenerative spurs and narrowed disc space of the vertebral bodies
   at C6-C7 and spondolytic changes w/ mild foraminal stenosis at C6-C7.

   2. Mild degenerative spurs of the verteberal bodies L1-L5 w/ Grade 1
   retrolisthesis at L5_S1.

   3.SI joints unremarkable, but follow up study is clinically indicated.

   I read up on as much as I could and found that often, early in the
   disease, SI joints won't show changes yet on "XRAY". MRI's often
   will, though. I think I'm heading there next.

   Hope to hear from you guys.

   Pia

   [Non-text portions of this message have been removed]

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