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
>