More Information about my new dx of rare ms

[deborah0904]

Several days ago, I posted that I had been diagnosed with a very rare form of MS.  In my post I asked about the connection between Polycystic Ovarian Disease and MS.  I have new information.

My form of MS has something to do with the adrenal system, not Polycystic Ovarian Disease.  The Acanthosis Nigricans that I have was thought to be due to the PCOS but the Neurologist is convinced it has everything to do with this form of MS.

I believe he is very right because when I began having the most noticable symptoms, I remember the rush of adrenalin in my legs.  The Acanthosis began at the same time.  Oddly enough, last week I felt so bad and was having pain in my back around my kidneys.  I thought "Oh no, not another bladder/kidney infection".  Well, guess what?  The Adrenal Glands sit on top of the kidneys.  I'm convinced the pain was from the Adrenal Glands.  I could be wrong but some things are finally making sense.

The Neuro kept asking me who in my family has symptoms like I have.  Apparently it is a genetic thing.  Sunny, I may have to have some tests like you had.  Not sure but am wondering.  He said the possibilities of my type of variant MS are Schilder's, Marburg, AdrenaLeukoDystrophy, Addison Schilder's.

I've decided I want to go to University of Kansas City for treatment.  It is closer to me and I hear Dr. Lynch is a great specialist for rare MS.  My weakness is fastly progressing so I'm praying I can hang in there until after the first of the year because she is booked until then.

Anyway,  I just wanted to clear up what I had reviously mentioned.

[sickofsick62]

i hope you are able to write me and tell me about your situation. as , i see it has been two years since you questioned all this rare ms stuff.
i believe i have the same thng.

please write me back and let me know what the specialist said.
i have had ms my whole life. im 48. i have chronic renal disease and there isnt a whole lot they can do for me as i have apnea and "copd".

i hope you write me back im fascinated with this illness.
thankyou
shirley

[wonko]

I can't imagine how confusing this must be for you.  Hopefully, proper identification will lead to optimal treatment.  Going into a university setting sounds appropriate in your case.

best of luck!

[Lulu54]

Deborah,
As I think I said before, I am so new to this MS stuff I know nothing about your condition but it sure gives me some things to go research.  I'm sorry to hear you can't get in to the specialist until January -- did you put your name on their waiting list in case they have a cancellation?

Keep us posted, Lulu