Multiple system atrophy

[BilboB]

Hello all;
I have been a member a couple years and have just changed neurologists. My new neurologist seems very smart and came recommended by two local md's.

I have not been dx'd with MS tho my symptoms mimic MS symptoms and i have been disabled for a few years.

My new neuro suggested the possibility of Multiple System atrophy as I have movement disorders, sleep apnea, neurogenic bladder, parasthesias hands and feet, extreme fatigue and heat intolerance. I also have a bizarre burping thing in which I burp when touched. oh, trigeminal neuralgia too.

It is 66 degrees today in Eugene OR and I am sweltering in the heat. Had to leave church in the middle to stand in the doorway. too hot.

I'm very worried about my symptoms, and why i have been unable to get a diagnosis for so long. My MRIs, neck spine head are all perfect. Labs perfect. I look normal.

I am so tired, any uplifting thoughts would be welcome.
Thanks.
Bilbob

[502E79]

Hi Bilbob,

I wasn't diagnosed immediately either, no signs on MRIs or spinal tap etc. My sx seem mild... no heat, bladder or sleep issues.

Some movement disorders, some sleep (tired!) issues, sexual issues... spastic hand and drop foot are my new norm.

MS symptoms and a (lack of) diagnosis are common postings, as you well know.

I will do as I do for myself and others... say a prayer. Do not add worry to your SX, nothing good ever comes from excessive behavior. Good luck with your new neuro!

Jer

[heliotrope]

The burping may be air swallowing. Don't expect to get a quick answer for it - not too common with MS. I have it too. Somewhat stress related, but I'm never sure what "causes it" initially.

[RedTalon]

For some it takes a bit of work to get the dx pinned down, but if its ms it eventually will get pinned down.

I will say a pray for you

[lindarb]

Multiple Symptom Atrophy Cerebellar Predominant

That was my diagnosis 5 yrs. ago after months of extensive testing; towards the end I was begging to be diagnosed with MS because at least I'd heard of that and seemed to have most of the symptoms...3 yrs. ago I got my wish. New Neurologist, new diagnosis, PPMS. We have mostly the same symptoms, except the burping. And I suffer from cold, not heat (same pain, different source) In the end it probably doesn't matter what "It" is called; only matters if it can be treated. Mine is a steady decline that has picked up the pace this past year and there aren't any more good days; my best are the ones when I don't fall. But so many of us are finding treatments that do work so I think we just keep-keeping on until we find the right one...and hope its soon! I'm 62 and last year started worrying what I'd do when I reached retirement age....now I just hope to make 63! I'll be watching for you, hoping to hear how you are doing. You are the only one I've found with MSA diagnosis.