How was your experience at Mayo? Hope it went well. I know you were nervous about it. What all test did they do? Keep us posted.
Did you use immuno suppresants? Did it help with the POTS or MS? I think over active immune system may play a part. How do you go about getting this looked into? I've read allot about MS and POTS being connected. Sometimes the POTS diagnosis comes first, then the MS. I have the tremors too and severe leg weakness.
I was just scanning over my post to you...Oh My!!! Please excuse the spelling errors!
So you live in Florida? I do too.....I have no weight gain w/ the Baclofen so I am not quite sure of the weight gain. The only thing that I could find on line inregards to weight gain and Baclofen was about something in a preganant rat.......
Are you on any other meds? ther are several others that can cause weight gain.
When will you be getting your test result answers from Mayo??
Please keep us posted because this is an ongoing discussion among many medical communities...So, your info will help out a lot on what Mayo thinks.
My Neuro and Electrophysiologist as well as my Cardiologist, think that MS and Autonomic Dysfunction can go hand in hand.....That's not to say that everyone who has a Dysautonomia will have an AutoImmune / CNS disease But..in my case yes, ther is a correlation.
take Care,
~Tonya
Yes, I do see a neurologist. I had Guillain Barre 9 years ago so I have seen him for a while. He is curious about a cns disorder that is causing the POTS and walking difficulties etc.
I went to Mayo in Jacksonville last week and am awaiting their thoughts. I hurt all the time and am so weak but the baclofen has really helped with the tremors. But I am gaining weight...any thoughts on why?
Thanks for your response!
Erika
Hi Erika :)
I too take Baclofen, klonopin, gabapentin. But I have both Autonomoc Dysfunction (NCS) and Multiple Sclerosis. I know that the Ativan can help the CNS System in that help you to relax (B/P goes down).
Just a thought.....Have you been to see a Neurologist?? For the wlaking problems and the Tremors???
Anti-anxiety medications, such as Xanax, Ativan, and Klonopin, can be used to combat imbalances of adrenaline usually seen with POTS patients. Clonidine (Klonopin) can work in patients with reduced sympathetic activity. Ironically an anti-hypertensive drug, Clonidine promotes production and release of epinephrine and norepinephrine.
Hope some of this makes since...hope it helps a bit.
~Tonya