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-   -   Something is wrong but dont belong anywhere.. (https://www.neurotalk.org/multiple-sclerosis/53279-wrong-dont-belong.html)

SandyC 08-30-2008 05:27 PM

I remember you! Sorry your starting to have a hard time again but congrats on the new job! There is nothing more satisfying than helping others. Good for you!

Now, September 1st is around the corner. I'd say you should see a doctor. Why not? Even if they don't think it's ms, it may be something that can be helped. Besides, you need your bp meds so I don't think you have any options.

Good luck with the new job and welcome back. :hug:

Nancy T 08-30-2008 07:46 PM

Hi Jan--it's so hard when you have many odd symptoms and problems and nothing fits neatly together, and no doctor seems determined to follow through with you.

Hang in there and do whatever you need to do to be functional and feel well enough to stick with your job. Sometimes that means going to the doctor just to insist on help with a specific problem, even if you can't get a diagnosis.

Take care & good luck with everything,
Nancy T.

SallyC 08-30-2008 07:49 PM

Hi Jan, I'm so glad you came back *home* for some much needed and much deserved support. You have always been there for us when we needed you and we want to be here for you, now..:hug:

I don't have anything to add to the excellent advice you have already received, but just want to let you know that I am in your corner, rooting for you..:)

Feel better. :hug:

weegot5kiz 08-30-2008 08:04 PM

Hello Jan yes it is Frank, you and I have chatted before, hope you are feeling better, AMN is right this is a great place to be for support, :hug: and prayers

NurseNancy 08-30-2008 10:54 PM

hi jan,

i'm glad you've found your way back to us. i remember you too.

i agree with the others. 9/1 is only days away.
i think finding a good internist is the 1st step you should take.
a thorough PE with a new dr may be just the ticket you need.

then he/she can refer to specialists. maybe you need some new mri's too.
but, in any case starting with a fresh dr is step #1.

i understand the pressure of the probation period. just do the best you can which i'm sure will be great.

good luck and let us hear from you.
best,

PolarExpress 08-30-2008 11:32 PM

Hi Jan! I'm glad you checked in here, but so sorry things have been so rough. It can be so frustrating dealing with doctors, especially when nothing fits together in a neat little diagnostic package. Don't give up, though! Ask around, find out who others see and like. The next doctor you go to could be the one you need. You're in all our thoughts and prayers, I'm sure you know that! :hug:

lady_express_44 08-31-2008 10:04 AM

Hi Jan,

Is there anyone else in your extended family that have had autonomic dyfunction?

Are autonomic abnormalities and brain lesions are your primary symptoms? Has your doctor discussed/have you researched all the potential causes and symptoms of Dysautonomia?

From what I understand, PwMS don't often have autonomic abnormalities early on in the disease process, and most don't experience those symptoms at all. Some do, of course, but if there are other diseases that have both Dysautonomia and lesions/atrophy more commonly.

Either way, this must be scary. However, if they can nail down the cause, at least they may be able to treat the underlying illness.

Cherie

Jan4you 08-31-2008 10:44 AM

Again a BIG WOW for all your support. Its humbling let me tell you to receive. A good lesson for me though.

Cherie, no one else in my BIG family has this autonomic stuff, but my mom had very similar symptoms and I always thought they just put her DX in the arthritis box and never did an MRI. She colllapsed at her desk at work and was told she had seizures. She was on meds for years without a single seizure and the meds wore down her heart dying of congestive heart failure.

This started with tingling in my face. I have had iritis and sensitivity to my eyes, moving them or blurriness.
Dizzy spells that last for seconds or weeks, months.

Balance, unsteady walking, buzzing and spasms in my legs. SPASTICITY in my legs and back are the longest and only one never corrected even for a day.

BALANCE problems for a long time until I went to this amazing nutritionist. It has improved since seeing him 2006. I was near organ failure in his first eval of me.

SHAKING inside my head is what brought me to the other neuro who thinks I have a form of narcolepsy along with these autonomic problems. This shaking ONLY happens when I am on my side or sleeping or having just fallen alseep. He thinks the autonomic problms ARE a form of narcolepsy.

These 2 neuros take my autonomic problem seriously. I always seem to present with TIA/Stroke or heart attack. in the ER, they admit me, then dismiss me as having "altered consciousness"... hmmm..

I have had swallowing problems Brain Atrophy, major cognitive problems, SPEECH difficulties, SPACING out which is the scariest part part. I try to cover all my other symptoms on the job.

Yet I have managed to work. With the stress of my new job, and having to get up so early may be provoking all this new stuff.

My last PCP, a great female doc who stayed on top of everything, gave me a RX for my beta blockers knowing it will be a while to find the right MD now.

Thanks again.. I am on a journey.. like it or not.
Warmly,
Jan

lady_express_44 08-31-2008 11:06 AM

Jan, one of the differential dx for MS is adult-onset autosomal dominant leukodystrophy.

"An autosomal-dominant leukodystrophy presenting in adulthood, causing motor and cerebellar deficits, usually with prominent autonomic dysfunction. The genetic defect is unknown.

Especially resembles primary progressive MS, with chronic upper motor neuron and cerebellar deficits accompanied by confluent white-matter lesions on MRI and occasionally IgG abnormalities in the CSF.

Family history with autosomaldominant inheritance. Automatic involvement is also prominent early."

http://www.neurology.wisc.edu/public...bs/Neuro_2.pdf
(see #56, at the end of the document).

I think there are different kinds of leukodystrophies too:

http://www.ninds.nih.gov/disorders/l...odystrophy.htm

Cherie

braingonebad 08-31-2008 11:16 AM

Quote:

Originally Posted by sabimax (Post 358018)
hey Jan,
I remember you...another limbo girl....here I am too....hugsss to you...

Hey I am seeing an endrocrinologist...sp??? soon, in October...although my thyroid test was good...my dr just said lets see about hormone related stuff..and who knows, another type of dr might just figure out a new way to go...hoping so....

hugsss to you Jan, take it easy, take care, and stay and visit more..hugss,sarah

Let us know what he says, okay?

I was thinking of going to see one, and Jan I agree you should as well. It never hurts to rule things out. On the other hand, wouldn't it be nice to find the trouble and know there's something you can do about it?



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