Can anyone tell me where i can find info on the duraggesic patch.. i  want
to tell my doctor about it...


In a message dated 11/21/2009 8:25:29 A.M. Central Standard Time,
worldtropics@... writes:




Hello everyone! I've been subscribed to this group for several months now.
Yet, this is my first posting to this group, and in reply to
Tvillingerne2004

I take Fentanyl every so often, and in fact, I am  wearing a Fentanyl patch
right now; a Duragesic 50mcg per hour patch. I can  attest to the wonders
of Fentanyl, as it greatly reduces my muscle and nerve  pain while I am
wearing it. I love the stuff, even despite that it does cause  me to be
nauseous,
vomiting, and sedation after wearing the patch for several  hours.

Caution must be taken while using Fentanyl. There are some  side effects
and risks to it. However, the side effects are manageable and the  benefits of
Fentanyl far outweigh the risks to it, at least in my  opinion.

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







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

My daughter had tight hamstrings all of her life and she had CMT....I have
it, too, and I think mine are tight as well...Kathy


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

It has side effects which perhaps do not happen to everyone.  Here is a site for
it:

http://www.drugs.com/sfx/fentanyl-side-effects.html

I wouldn't take it again either if I experienced the side effects you did. 
Also, I do not take it.

Sal

--- In CMT-Support@yahoogroups.com, "tvillingerne2004" <tvillingerne2004@...>
wrote:
>
> Hi everyone - The doctors gave me Fentanyl his thursday, I ended up in the
hospital because I got very sick of the Fentanyl
>
> Has anyone you experience from getting Fentanyl. I will ever never have that
kind of drugs again.
>
> And I have written Fentanyl on my medical alert liste.
> My CMT feels very bad, now, and here to days after I still feels like there is
Fentanyl in my body.
>
> /Tvillingerne2004
>

Hello everyone! I've been subscribed to this group for several months now. Yet,
this is my first posting to this group, and in reply to Tvillingerne2004

I take Fentanyl every so often, and in fact, I am wearing a Fentanyl patch right
now; a Duragesic 50mcg per hour patch. I can attest to the wonders of Fentanyl,
as it greatly reduces my muscle and nerve pain while I am wearing it. I love the
stuff, even despite that it does cause me to be nauseous, vomiting, and sedation
after wearing the patch for several hours.
 
Caution must be taken while using Fentanyl. There are some side effects and
risks to it. However, the side effects are manageable and the benefits
of Fentanyl far outweigh the risks to it, at least in my opinion.




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

Hi everyone - The doctors gave me Fentanyl his thursday, I ended up in the
hospital because I got very sick of the Fentanyl

Has anyone you experience from getting Fentanyl. I will ever never have that
kind of drugs again.

And I have written Fentanyl on my medical alert liste.
My CMT feels very bad, now, and here to days after I still feels like there is
Fentanyl in my body.

/Tvillingerne2004

I have CMT 1A, and I've had tight hamstrings all my life.  I was also born with
a shortened Achilles tendon, which is what I always thought caused the
tightness.

BTW, I am 40, and was just diagnosed this year, although I've had symptoms since
very little.

-Ivonne





To: CMT-Support@yahoogroups.com
From: tatefamily@...
Date: Thu, 19 Nov 2009 05:09:11 +0000
Subject: [CMT-Support] Hamstring Tightness




























       Is hamstring tightness something that you experience with CMT.  My 5 year
old has CMT.  We saw several specialists today and one informed us that she
seems to have something other than CMT going on because tight hamstrings are not
a symptom of CMT.  We know she has CMT from genetic testing.  Just curious if
any of you have this symptom and what your thoughts are.

Thank you!

Amy


















_________________________________________________________________
Hotmail: Trusted email with Microsoft's powerful SPAM protection.
http://clk.atdmt.com/GBL/go/177141664/direct/01/
http://clk.atdmt.com/GBL/go/177141664/direct/01/


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

Is hamstring tightness something that you experience with CMT.  My 5 year old
has CMT.  We saw several specialists today and one informed us that she seems to
have something other than CMT going on because tight hamstrings are not a
symptom of CMT.  We know she has CMT from genetic testing.  Just curious if any
of you have this symptom and what your thoughts are.
Thank you!
Amy

Thanks Lana - The doc did add Magnesium to the daily regimen and increased the
Cymbalta...It took almost 2 1/2 weeks but Andrew is doing much better.

He seems to be having difficulty maintaining vitamin levels...we already eat
healthy in our family, lots of fruits and vegetables, tons of milk, bananas, and
such.  Andrew is a water drinker as I am....  We are actually taking him to
Johns Hopkins in January to have another assessment done.

Julie

--- In CMT-Support@yahoogroups.com, Lana Jarvis <fyfer1949@...> wrote:
>
> I take 1000mg of magnesium am and pm.  Works for me.
> lj
>
> --- On Mon, 11/2/09, phantomsec4 <phantomsec4@...> wrote:
>
>
> From: phantomsec4 <phantomsec4@...>
> Subject: [CMT-Support] Severe Severe Calf Muscle Spasms
> To: CMT-Support@yahoogroups.com
> Date: Monday, November 2, 2009, 7:00 PM
>
>
>  
>
>
>
> Hi everyone -
>
> Andrew has been suffering from excruciating calf spasms for about 8 days now.
Twice I've almost taken him to the ER but he says he doesn't want to go because
he knows they'll just dope him up and that it won't be a permanent fix.
>
> We have tried massage, warm baths, he can't tolerate cold packs. Doesn't want
the heating pad. The doc has increased his Cymbalta, increased his Zanaflex,
he's had valium to boot. I am at my wits end...it's breaking my heart. He's even
moaning in his sleep.
>
> Any ideas for easing the pain? Does anyone remember having these kinds of
pains as a teenager? Is it possible they are growing pains (although heaven help
me he's already 6'1) Still trying to keep a sense of humor about us but it's
getting more difficult by the minute.
>
> I am feeling utterly helpless and useless and that's my little pity party for
right now.
>
> Thanks
>
> Julie
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

Perhaps if you feel good enough, 6 hours is fine for you.  Others might need
more sleep.  I know I need at least 8 hours.

Sal

--- In CMT-Support@yahoogroups.com, orania nassau <orania_nassau@...> wrote:
>
>
> I have CMT 2. I sleep 6 hours every day. 6 hours from 24. What do you think,
is this sufficient?
>  
>  
>
> --- On Sat, 11/14/09, fittness <Brianwahr@...> wrote:
>
>
> From: fittness <Brianwahr@...>
> Subject: [CMT-Support] Re: Severe Severe Calf Muscle Spasms
> To: CMT-Support@yahoogroups.com
> Date: Saturday, November 14, 2009, 9:47 PM
>
>
>  
>
>
>
> Drink water 8-10 glasses a day!!!
>
> --- In CMT-Support@ yahoogroups. com, "phantomsec4" <phantomsec4@ ...> wrote:
> >
> > Hi everyone -
> >
> > Andrew has been suffering from excruciating calf spasms for about 8 days
now. Twice I've almost taken him to the ER but he says he doesn't want to go
because he knows they'll just dope him up and that it won't be a permanent fix.
> >
> > We have tried massage, warm baths, he can't tolerate cold packs. Doesn't
want the heating pad. The doc has increased his Cymbalta, increased his
Zanaflex, he's had valium to boot. I am at my wits end...it's breaking my heart.
He's even moaning in his sleep.
> >
> > Any ideas for easing the pain? Does anyone remember having these kinds of
pains as a teenager? Is it possible they are growing pains (although heaven help
me he's already 6'1) Still trying to keep a sense of humor about us but it's
getting more difficult by the minute.
> >
> > I am feeling utterly helpless and useless and that's my little pity party
for right now.
> >
> > Thanks
> >
> > Julie
> >
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

I have CMT 2. I sleep 6 hours every day. 6 hours from 24. What do you think, is
this sufficient?
 
 

--- On Sat, 11/14/09, fittness <Brianwahr@...> wrote:


From: fittness <Brianwahr@...>
Subject: [CMT-Support] Re: Severe Severe Calf Muscle Spasms
To: CMT-Support@yahoogroups.com
Date: Saturday, November 14, 2009, 9:47 PM


 



Drink water 8-10 glasses a day!!!

--- In CMT-Support@ yahoogroups. com, "phantomsec4" <phantomsec4@ ...> wrote:
>
> Hi everyone -
>
> Andrew has been suffering from excruciating calf spasms for about 8 days now.
Twice I've almost taken him to the ER but he says he doesn't want to go because
he knows they'll just dope him up and that it won't be a permanent fix.
>
> We have tried massage, warm baths, he can't tolerate cold packs. Doesn't want
the heating pad. The doc has increased his Cymbalta, increased his Zanaflex,
he's had valium to boot. I am at my wits end...it's breaking my heart. He's even
moaning in his sleep.
>
> Any ideas for easing the pain? Does anyone remember having these kinds of
pains as a teenager? Is it possible they are growing pains (although heaven help
me he's already 6'1) Still trying to keep a sense of humor about us but it's
getting more difficult by the minute.
>
> I am feeling utterly helpless and useless and that's my little pity party for
right now.
>
> Thanks
>
> Julie
>











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

Drink water  8-10 glasses  a day!!!






--- In CMT-Support@yahoogroups.com, "phantomsec4" <phantomsec4@...> wrote:
>
> Hi everyone -
>
> Andrew has been suffering from excruciating calf spasms for about 8 days now. 
Twice I've almost taken him to the ER but he says he doesn't want to go because
he knows they'll just dope him up and that it won't be a permanent fix.
>
> We have tried massage, warm baths, he can't tolerate cold packs. Doesn't want
the heating pad. The doc has increased his Cymbalta, increased his Zanaflex,
he's had valium to boot.  I am at my wits end...it's breaking my heart.  He's
even moaning in his sleep.
>
> Any ideas for easing the pain? Does anyone remember having these kinds of
pains as a teenager?  Is it possible they are growing pains (although heaven
help me he's already 6'1) Still trying to keep a sense of humor about us but
it's getting more difficult by the minute.
>
> I am feeling utterly helpless and useless and that's my little pity party for
right now.
>
> Thanks
>
> Julie
>

I take 1000mg of magnesium am and pm.  Works for me.
lj

--- On Mon, 11/2/09, phantomsec4 <phantomsec4@...> wrote:


From: phantomsec4 <phantomsec4@...>
Subject: [CMT-Support] Severe Severe Calf Muscle Spasms
To: CMT-Support@yahoogroups.com
Date: Monday, November 2, 2009, 7:00 PM


 



Hi everyone -

Andrew has been suffering from excruciating calf spasms for about 8 days now.
Twice I've almost taken him to the ER but he says he doesn't want to go because
he knows they'll just dope him up and that it won't be a permanent fix.

We have tried massage, warm baths, he can't tolerate cold packs. Doesn't want
the heating pad. The doc has increased his Cymbalta, increased his Zanaflex,
he's had valium to boot. I am at my wits end...it's breaking my heart. He's even
moaning in his sleep.

Any ideas for easing the pain? Does anyone remember having these kinds of pains
as a teenager? Is it possible they are growing pains (although heaven help me
he's already 6'1) Still trying to keep a sense of humor about us but it's
getting more difficult by the minute.

I am feeling utterly helpless and useless and that's my little pity party for
right now.

Thanks

Julie



















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

There will be a meeting of the northern New England CMT Support Group on
November 21, at Dartmouth Hitchcock Hospital, Lebenon, NH, 10am to 12pm. 
Refreshments are provided.  Topic:  Assistive devices.  Anyone with CMT is
invited to bring any devices or aids to show others in the group.  Door prizes. 
Contact me at my yahoo email address for contact info.




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

Tami, I can relate to how ur feeling. My son who is almost 9 has Asperger's
disorder (mildest form of autism). He has motor skill delays and an odd gait as
well. I have cmt amongst a host of other disabilites. I have been through the
run around with doctors all my life. I have had experiences where I have nearly
died from the doctors ignorance and it was only through my and my moms
determination that the problems were corrected and caught. All I can suggest is
to go through it with a positve attitude and keep digging away til you find the
answers you are looking for. It can be a long road ahead but that road will
eventually open up and there will be clear sailing for the most part. We are
always here to listen and try and help when you need it.

                                        \
               Summer




________________________________
From: aviphotos3 <aviphotos3@...>
To: CMT-Support@yahoogroups.com
Sent: Fri, November 13, 2009 4:49:34 AM
Subject: [CMT-Support] New here, 5 yo son prelim dx CMT today on top of
Autism... long!!

 
... and a host of other diagnoses. I have been up all night, not able to sleep,
alternating between crying and searching the internet like an obsessed person
for information. I'm glad I've found some great information and some groups like
this to turn to for questions and support.

Here's our story:

My son is 5 and was diagnosed earlier this year with high functioning autism,
ADHD, Sensory Integration Disorder after I had fought for almost 2 years to get
him diagnosed. We began working with an amazing OT that has made a world of
difference for us. During her evaluation last December she recommended I see the
PT because his gait and motor skills seemed very off to her. We did see the PT
and she came to the conclusion that he had heel cord tightness (he keeps his
foot in plantar flex ALL the time even when sleeping, and couldn't even get to
neutral in dorsiflex) but at the time it was not causing so much impairment that
we felt like it was the right timing to address it since we were just starting
to deal with the autism. She is also an amazing therapist and she was the first
person who told me to prioritize and take care of myself and not try to take on
every thing at once. Only the big stuff that was impacting him the most.

So that's what we did, concentrated on OT and Speech and he made unbelievable
progress (he's a different kid now from 2 years ago! still has his issues but
he's a happy loving kid now) About the time summer hit I had started noticing
that he was getting more "clumsy" and having a lot harder time with balance and
walking, etc. I talked to the PT again and told her it was getting worse and
maybe it was time to try night splints.

We tried, hard, all summer but he didn't tolerate them that well, so in August
we started serial casting. Surprisingly he tolerated the casting great! I think
he liked the support the casts gave him and the deep pressure on his legs. But,
after 5 weeks the PT and I decided that it might be wise to discontinue and see
Ortho for possible bone abnormalities because the casting was not working. He
had gotten a small amount of dorsiflex but still barely at neutral. The PT said
there just had to be something else going on.

We got an initial appt with Ortho and they did xrays and said that there was a
problem with one of the bones on top of his foot (can't remember the name) and
scheduled a surgical consult for Dec. 4.

Right after his casts came off he would not put any weight at all on his feet
and cried they hurt so bad, we figured from sensory depravation and weakness,
but he got the flu within 5 days which ended up with him in the hospital for 4
days with complications and pneumonia. So after the casts came off he did not
walk, at all, for almost 3 weeks. We finally have gotten him walking and
exercising his legs and he gets stronger every day.

But last week at PT a new concern was raised and she asked me to go see the
Rehab clinic at Children's Hospital. She said the more she observed him, she was
beginning to wonder if there were any neurological problems underlying these
motor and mobility issues. She said they could take an overall look, not just at
one specific part and see if we needed more evaluations from specialists.

So, we went today. The doctor did a neurologic exam and asked a lot of questions
about any one else in the family with the same high arches, feet problems, weak
hands, etc... I'm sure you all know the interview :)

Honestly I hadn't thought about it much but I did tell him my dad has always had
problems with his feet and as he got older with his hands. And the more I look
back, my grandma has had a lot of the same problems too, especially severe
balance problems. She was diagnosed with MS in her 30s but then they said it
mysteriously went away after a few years. Hmmm.

So after examining him for a long time he starts telling me that Tyler has a
differential diagnosis of Hereditary Motor-Sensory Neuropathy and that we need
to confirm it with EMG & NCV with sedation if he needs it. And then consider
blood DNA testing depending on the outcome and possibly MRI.

He asked for my dad to come to the test and possibly be examined as well to
establish family history. He did take a look at my feet and hands and said he
didn't see any indication that I have CMT although I actually think I have some
slight symptoms that just aren't as common or obvious like pain in my hands that
is not arthritis.

So this evening has been rough for me, very emotional to say the least. I have
no doubt that we will do everything we can to help Tyler stay as healthy and
happy as possible, but I just feel like this poor kid has been thru enough
already. He's already had 3 surgeries before he was 2 and only has one testicle
left from that fiasco, the autism and ADHD and sensory stuff, and now the
possibility of an incurable, degenerative disease? :( I'm just reeling. Thank
goodness he is such a happy, loving little boy and doesn't seem to realize that
all this has been dealt to him, not in the way we perceive it.

And, I'm wondering if I'm grieving over nothing? What is a differential
diagnosis? I just have a hard time believing that he doesn't have some form of
this after all the research I've done tonight and seeing the exam and adding up
the pieces, including my family's history although no one has ever been
diagnosed with CMT. Everything fits.

And then I start worrying about my other 3 boys, and even myself. I have a lot
of health issues that are unexplained right now and my doctor keeps trying to
tell me its arthritis when its not even in my joints, lots of depression and
fatigue and occasionally tremors in my hands that no one will address. I've been
thinking that maybe I have MS like my grandma but now I'm thinking this seems
like a possibility that is more likely.

We went thru a horrible divorce a few years ago, the boys dad hasn't bothered to
contact or see them in over a year now, and now because I choose to stay home so
I can give Tyler and my other boys the care they need especially with his
disability, I don't have health insurance so can't even be tested, no way I
could afford it and then I would probably never be able to get insurance if I
was diagnosed.

Anyway, thanks for listening. I guess I just needed to vent to a group of people
that I knew would understand where I'm at. My family is so supportive and
wonderful, especially my boyfriend, but even he can't truly feel what I'm
feeling right now.

If anyone has any thoughts on our experience or suggestions, I would love to
hear them. I tend to be very proactive (once I get over the shock and grief) and
want to do everything I can to not let this be a doom and gloom outlook for my
son and for all of my family.

TIA
Tami







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

... and a host of other diagnoses. I have been up all night, not able to sleep,
alternating between crying and searching the internet like an obsessed person
for information. I'm glad I've found some great information and some groups like
this to turn to for questions and support.

Here's our story:

My son is 5 and was diagnosed earlier this year with high functioning autism,
ADHD, Sensory Integration Disorder after I had fought for almost 2 years to get
him diagnosed. We began working with an amazing OT that has made a world of
difference for us. During her evaluation last December she recommended I see the
PT because his gait and motor skills seemed very off to her. We did see the PT
and she came to the conclusion that he had heel cord tightness (he keeps his
foot in plantar flex ALL the time even when sleeping, and couldn't even get to
neutral in dorsiflex) but at the time it was not causing so much impairment that
we felt like it was the right timing to address it since we were just starting
to deal with the autism. She is also an amazing therapist and she was the first
person who told me to prioritize and take care of myself and not try to take on
every thing at once. Only the big stuff that was impacting him the most.

So that's what we did, concentrated on OT and Speech and he made unbelievable
progress (he's a different kid now from 2 years ago! still has his issues but
he's a happy loving kid now) About the time summer hit I had started noticing
that he was getting more "clumsy" and having a lot harder time with balance and
walking, etc. I talked to the PT again and told her it was getting worse and
maybe it was time to try night splints.

We tried, hard, all summer but he didn't tolerate them that well, so in August
we started serial casting. Surprisingly he tolerated the casting great! I think
he liked the support the casts gave him and the deep pressure on his legs. But,
after 5 weeks the PT and I decided that it might be wise to discontinue and see
Ortho for possible bone abnormalities because the casting was not working. He
had gotten a small amount of dorsiflex but still barely at neutral. The PT said
there just had to be something else going on.

We got an initial appt with Ortho and they did xrays and said that there was a
problem with one of the bones on top of his foot (can't remember the name) and
scheduled a surgical consult for Dec. 4.

Right after his casts came off he would not put any weight at all on his feet
and cried they hurt so bad, we figured from sensory depravation and weakness,
but he got the flu within 5 days which ended up with him in the hospital for 4
days with complications and pneumonia. So after the casts came off he did not
walk, at all, for almost 3 weeks. We finally have gotten him walking and
exercising his legs and he gets stronger every day.

But last week at PT a new concern was raised and she asked me to go see the
Rehab clinic at Children's Hospital. She said the more she observed him, she was
beginning to wonder if there were any neurological problems underlying these
motor and mobility issues. She said they could take an overall look, not just at
one specific part and see if we needed more evaluations from specialists.

So, we went today. The doctor did a neurologic exam and asked a lot of questions
about any one else in the family with the same high arches, feet problems, weak
hands, etc... I'm sure you all know the interview :)

Honestly I hadn't thought about it much but I did tell him my dad has always had
problems with his feet and as he got older with his hands. And the more I look
back, my grandma has had a lot of the same problems too, especially severe
balance problems. She was diagnosed with MS in her 30s but then they said it
mysteriously went away after a few years. Hmmm.

So after examining him for a long time he starts telling me that Tyler has a
differential diagnosis of Hereditary Motor-Sensory Neuropathy and that we need
to confirm it with EMG & NCV with sedation if he needs it. And then consider
blood DNA testing depending on the outcome and possibly MRI.

He asked for my dad to come to the test and possibly be examined as well to
establish family history. He did take a look at my feet and hands and said he
didn't see any indication that I have CMT although I actually think I have some
slight symptoms that just aren't as common or obvious like pain in my hands that
is not arthritis.

So this evening has been rough for me, very emotional to say the least. I have
no doubt that we will do everything we can to help Tyler stay as healthy and
happy as possible, but I just feel like this poor kid has been thru enough
already. He's already had 3 surgeries before he was 2 and only has one testicle
left from that fiasco, the autism and ADHD and sensory stuff, and now the
possibility of an incurable, degenerative disease? :( I'm just reeling. Thank
goodness he is such a happy, loving little boy and doesn't seem to realize that
all this has been dealt to him, not in the way we perceive it.

And, I'm wondering if I'm grieving over nothing? What is a differential
diagnosis? I just have a hard time believing that he doesn't have some form of
this after all the research I've done tonight and seeing the exam and adding up
the pieces, including my family's history although no one has ever been
diagnosed with CMT. Everything fits.

And then I start worrying about my other 3 boys, and even myself. I have a lot
of health issues that are unexplained right now and my doctor keeps trying to
tell me its arthritis when its not even in my joints, lots of depression and
fatigue and occasionally tremors in my hands that no one will address. I've been
thinking that maybe I have MS like my grandma but now I'm thinking this seems
like a possibility that is more likely.

We went thru a horrible divorce a few years ago, the boys dad hasn't bothered to
contact or see them in over a year now, and now because I choose to stay home so
I can give Tyler and my other boys the care they need especially with his
disability, I don't have health insurance so can't even be tested, no way I
could afford it and then I would probably never be able to get insurance if I
was diagnosed.

Anyway, thanks for listening. I guess I just needed to vent to a group of people
that I knew would understand where I'm at. My family is so supportive and
wonderful, especially my boyfriend, but even he can't truly feel what I'm
feeling right now.

If anyone has any thoughts on our experience or suggestions, I would love to
hear them. I tend to be very proactive (once I get over the shock and grief) and
want to do everything I can to not let this be a doom and gloom outlook for my
son and for all of my family.

TIA
Tami

Oral high dose ascorbic acid treatment for one year in young CMT1A patients: a
randomised, double-blind, placebo-controlled phase II trial

High dose oral ascorbic acid substantially improved myelination and locomotor
function in a Charcot-Marie-Tooth type 1A mouse model. A phase II study was
warranted to investigate whether high dose ascorbic acid also has such a
substantial effect on myelination in Charcot-Marie-Tooth type 1A patients and
whether this treatment is safe.

Methods: Patients below age 25 years were randomly assigned to receive placebo
or ascorbic acid (one gram twice daily) in a double-blind fashion during one
year.

The primary outcome measure was the change over time in motor nerve conduction
velocity of the median nerve. Secondary outcome measures included changes in
minimal F response latencies, compound muscle action potential amplitude, muscle
strength, sensory function, Charcot-Marie-Tooth neuropathy score, and
disability.

Results: There were no significant differences between the six placebo-treated
(median age 16 years, range 13 to 24) and the five ascorbic acid-treated (19, 14
to 24) patients in change in motor nerve conduction velocity of the median nerve
(mean difference ascorbic acid as opposed to placebo treatment of 1.3 m/s,
confidence interval -0.3 to 3.0 m/s, P = 0.11) or in change of any of the
secondary outcome measures over time.

One patient in the ascorbic acid group developed a skin rash, which led to
discontinuation of the study medication.

Conclusions: Oral high dose ascorbic acid for one year did not improve
myelination of the median nerve in young Charcot-Marie-Tooth type 1A patients.
Treatment was relatively safe.Trial registration: Current Controlled Trials
ISRCTN56968278, ClinicalTrials.gov NCT00271635.

Author: Camiel VerhammeRob de HaanMarinus VermeulenFrank BaasMarianne de
VisserIvo van Schaik
Credits/Source: BMC Medicine 2009, 7:70

http://7thspace.com/headlines/325348/oral_high_dose_ascorbic_acid_treatment_for_\
one_year_in_young_cmt1a_patients_a_randomised_double_blind_placebo_controlled_ph\
ase_ii_trial.html

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

I clicked on the link but I have a virus protection on my computer.


Brian

Uh Oh!!

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

From: Becky
Date: 11/10/2009 10:10:07 AM
To: CMT-Support@yahoogroups.com
Subject: [CMT-Support] IMPORTANT


Do not click on the link that was in that last post from Summer. Its a virus
  I deleted the post, but if any of you already have it in your mail DO Not
Click On The Link. It was Not sent intentionally from Summer, her computer
is infected with a virus without her knowledge.

~>Becky M.





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

Do not click on the link that was in that last post from Summer.  Its a virus. 
I deleted the post, but if any of you already have it in your mail DO Not Click
On The Link.  It was Not sent intentionally from Summer, her computer is
infected with a virus without her knowledge.

~>Becky M.

hey daniel I have the same problem and my doctor,( gastrointestinalogist)
performed and endoscopy ,, and said I had the sme thing and kept me  on
prilosect priscription strength 40 mg and this has helped,, regards  bob..


To: CMT-Support@yahoogroups.com
From: EZgoing2@...
Date: Mon, 2 Nov 2009 23:58:39 -0500
Subject: Re: [CMT-Support] Re: swallowing





Rebecca, thank you for your post here.. I'm sure it will help someone.. if
not now, in the future.. These posts are open to the web and anyone can
search for information here.. (or at least they were a while ago.. Who knows
what Yahoo has done LMAO)..

BTW, I'm not the Ernie your looking for.. I live in Pa., a mile from the NY
state line.. Sorry

Ernie

----- Original Message -----
From: "Hey you" <becauseimlikethat@...>
To: <CMT-Support@yahoogroups.com>
Sent: Monday, November 02, 2009 12:00 AM
Subject: [CMT-Support] Re: swallowing

I have had trouble swallowing for quite some time. I have CMT. I recently
went in through the ER for an emergency endoscopy choking on chicken. They
then 2 months later went in for an upper GI and took a biopsy because of
continued swallowing problems. I always seem to have a hard swallow with a
lot of saliva build up. The biopsy came back that I have what they call
esophagitis. Many times I choke on meat, get tons of acidic of saliva build
up after drinking o.j., milk, etc. Many time having to vomit back up saliva
to get relief. Sorry, gross I know, but hope it helps if anyone else has
that problem. My MD put me on Kapidex 60mg 1x a day and also Flonase (where
instead of in my nose I spray in my mouth and swallow 2x a day). Not sure if
this helps, but I hope it does. Please feel free to email me outside of here
at daniel197373@... with any questions. Also, Ernie, are you the
Ernie that goes to the Greenville OH CMT meeting? If so I am interested in
going sometime again possibly. Not sure if you remember me - Rebecca. Take
care

--- In CMT-Support@yahoogroups.com, "Sue" <robertf626@...> wrote:
>
> I was wondering is there anyone in this group having problems with
> swallowing?
>

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