I am afraid I have MSA

[icantgo]

I am 44 year old female dx with POTS on 2005 due to positive tilt table. In 2008 POTS worsened and I could not work. At that time I began to have tremors, facsiculations,dropping everything,night sweats, tripping, neuropathy in feet, muscle weaknesss, etc. In 2010 I was dx with ataxia, and tested for MS.all test were fine except CSF showed very high in some type of protein and very low glucose. I have been told by neurologist and PCP that this is related to POTS. I am very ill and progressing rapidly. I became so confused recently that I briefly did recognize my family. I also have emotional lability which has only developed in the last 6 months. I should also mention that I have had resurring Ramsay Hunt since 2006, at least twice each year. I have a positive ANA. My doctor is urging me to go to MAYO, which I would like to avoid. Please advise, Thanks

[icantgo]

Thanks so much for your post. To Jane, no as of now I only have the orthostatic hypotension that is part of POTS, but I forgot to mention the rhombergs sighn, babinski sign, and the abnormal neuro exam. I am having problems with regulating my body temperature, and last week i asked my doctor if he thought I have MSA and his answer was " I think it would be extremely unlikely that you have two seperate neurological disorders that are unrelated." Also my twitches and spasms are so bad, my right foot muscle got so stiff and painful I couldnt walk. It lasted for aver three hours before it relaxed. I have decided to try one other local neurologist before I go to an academic center.
Thanks so much to everyone who posted.

[DysautonomiaPrison]

I certainly agree that you should to see a specialist but there is one 'must have' symptom of MSA you did not mention. Supine Hypertension is one of the hallmarks of MSA along with the Orthostatic Hypotension.

Good Luck, Jane

[AMO]

hello icantgo,

i know this is so hard without answers. It would be a good idea to go t o MAyo,  and see specialist neuros who have experiencce with MSA . They will know what   othhher tests to do to hopefully get you dx'd.
It is hard to not get ahead of yourself, i understand.
take good care, amo