Bored to death? Are you kidding!? I have finally found people who
are in the exact predicament as me. I am sorry we're all going
through this, but it is wonderful to know there are others out
there. I would like to start an advocacy of some kind: "Undiagnosed
Patients Being Told They Look Fine and/or Are Crazy" lol just kidding
but something like that. If there are three of us here just talking
about this today, imagine how many thousands of people are out there
in the same situation?

K2
--- In UNdiagnosedMS@yahoogroups.com, Carol Riley
<boomersoonercriley@...> wrote:
>
> Hi, My name is Carol and I'm 42 yrs. old. I'm really glad someone
is back on this sight. I have really missed it. For along time it
was all spam and I just quit trying to get it off.
>
> I have been having symptoms for 3 yrs. now. I have been to 3
neurolagist, 2 medical doctors and the Mayo Clinic. Still no
answer. All of them except the Mayo said it is MS. Mayo said, they
would not rule out MS but would like to test further. I said to them
that I have had every test under the sun and all I want is for
someone to tell me what is wrong with me. When my symptoms first
started they thought I had carpel tunnel because it was only in my
wrist. Within a couple of weeks it was in my other arm. It slowely
spread down my body with my feet being the last to go numb. The pain
in my feet and back is so unbearable that I am now in a wheelchair.
This started in August of 2004 and by Dec. I was using a walker. I
kept getting worse and worse until now. I just had some more mri's
ran, 3 to be exact and a ct of the chest and an eeg. She said that
when she got the results back on these and compared them to my other
ones that I would get my diagnosis and we
> would start some sort of treatment for whatever I have. I go back
to her on the 14th and I can't wait. I'm finally gonna get the
answer I've been looking for. A DIAGNOSIS
>
> It is nice chatting with you all and I hope I did'nt bore you to
death. I also hope to hear from you real soon.
>
> Carol
>
> K2 <hechobes@...> wrote:
>
> Hello Lori and welcome here. I am floored by your story, with the
> exception of your having been diagnosed with FM (I have not been
> diagnosed with anything, and think I also have FM), and I haven't
> been to a neuro yet (but have had migraines since I was 10 years
old)
> our stories are exactly the same, word-for-word. I am so
> discouraged. But the good news is I have my first appt with a
> neurologist, and she sounds really good so hopefully she will
listen
> to my symptoms. Because I waited til my 40s to begin trying to find
> out what is wrong (I've had symptoms since my teens and 20s) all
> doctors keep saying peri-menopause or depression. I am so
> frustrated. Like you, I know that the heat intolerance is not hot
> flashes. I don't have hot flashes. I just get sick when I get too
> warm. But the catch is that my feet and hands are always cold, so I
> bundle up. Very weird. I know when I'm depressed and when I'm not,
> and this is definitely something physical. I was tested for Lupus,
> and have no inflammatory markers or other signs that diagnose me
for
> lupus or RA. The rheumatologist and all 7 of the different PCPs
I've
> gone to keep treating me for sleep disorder. That's fine, but it's
> only ONE SYMPTOM of dozens. I maintain that the disordered sleep is
> a SYMPTOM of both FM and MS. Every web site you look at on both
> subjects says so, yet these doctors keep saying "If you'd just get
> your sleep in order, you'd be all better." I am now up to 6 1/2
> hours sleep, straight through with no interruptions (used to wake
up
> 17 - 20 times a night). And my cognitive and neurological symptoms
> are worse than ever. My thyroid is always normal. I have it checked
> all the time bec my mother has really bad endocrine problems
> (Addison's disease and hypothyrodism and no pituitary gland). I do
> have a hereditary spherocytosis (blood cells are odd-shaped and
kill
> themselves off), and this can cause anemia, but all doctors have
said
> the anemia doesn't cause my symptoms. I read everywhere online that
> anemia symptoms are exactly what I've been experiencing, but they
> keep saying no. I mean, if they had just said "yes, you have anemia
> and that's causing the tingling, pain, cognitive symptoms bla bla
> bla" I would've gone away a long time ago and stopped pushing them
> for answers. I honestly think none of them knows anything. I mean,
> they're not living in my body that I know so well, ya know what I
> mean?
>
> Anyway, I would love to continue communicating with you, either
here
> or private email. We sure have a lot in common!
>
> If you'd like to visit my blog and know more of my story it's
> www.k2walkingwounded.blogspot.com
>
> Best wishes,
>
> K2
>
> --- In UNdiagnosedMS@yahoogroups.com, "lorilu4453" <lorilu4453@>
> wrote:
> >
> > Here's my story so far: I was diagnosed with Fibromyalgia in
1990.
> > Along with that I have developed extreme heat-sensitivity the
last
> > couple of years. I knew that wasn't Fibro-related, but but didn't
> > know it could be MS-related until my sister was diagnosed with MS
2
> > years ago. I also have increasing cognitive issues and fatigue
> which
> > are making it hard to do my job. And I have pretty much all the
> > other symptoms of Fibro.
> >
> > Since I started feeling a lot worse in the last couple of months,
I
> > went back to my neurologist. It was like pulling teeth to get him
> to
> > listen to my symptoms :o) He has been treating me for years for
> > migraine headaches, and I guess he wasn't inclined to listen to
any
> > new symptoms. He tried to say it was hormonal (I have been having
> hot
> > flashes for 15 years - my "heat intolerance" IS NOT hormonal!!!)
> Then
> > he tried to put it off to Thyroid - I handed him a copy of a
blood
> > test my primary care physician requested the end of May -- my
> thyroid
> > is normal. All the other blood results were all normal or
> negative -
> > no hepatitis nor HIV. My sed rate is 1, so no lupus, rheumatoid
> > arthritis, etc. He then tried to put it off to the Fibromyalgia -
> > the newest theory about Fibro is that it is caused by sleep
> > problems. I told him I was sleeping better than I had in years.
> He
> > took me off of 2 of the preventative medications for migraines
that
> > could possibly be causing fatigue and cognitive issues. So far I
> am
> > not feeling any better . . . I told him that my Primary Care
> > Physician (PCP) tried to order an MRI, but the insurance company
> > wanted more back-up notes, so my PCP referred me back to my
> > neurologist.
> >
> > Finally, after I cried and probably sounded quite impatient and
> > irritable, my neuro calmly conceded that I should have an MRI.
> (Gee,
> > isn't that what I said?) The order he wrote for the MRI was for a
> > REPEAT MRI (I have never had one before . . .) because of chronic
> > migraines and because heat intolerance indicates demyelination. I
> am
> > pretty sure, from the way he acted, that he thought I was over-
> > reacting. The MRI is scheduled for next week. At least I am
> getting
> > started . . . I am hoping it shows SOMETHING.
> >
> > My older sister has MS and it took her 4 months to get diagnosed
> for
> > sure. She had symptoms for years (since her 30s) and she figured
it
> > was Chronic Fatigue Syndrome & Fibro. Her symptoms got worse 3
> years
> > ago and they started testing her. She had an inconclusive MRI, so
> the
> > doctor did a lumbar puncture, and an evoked potentials test. This
> > finally resulted in her diagnosis. I have read numerous articles
on
> > the internet and there are MANY stories about how it is very
> > difficult sometimes to get diagnosed. I am trying to be patient!
> >
> > I am both hopeful that it is MS (to finally explain why I feel so
> > bad) and scared that it is MS. My sister said this was normal -
> that
> > she felt the same way.
> >
> > I am very glad that I found this group. Thanks for being here!!
> >
> > Lori
> > Mesa AZ
> >
>
>
>
>
>
>
>
>
> ---------------------------------
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>