OT (kind of) - Differential diagnosis?

Does anyone know about sarcoidosis or neurosarcoidosis?  Or has your doctor questioned whether or not you may have that instead of MS?  I’m wondering if I might have that instead of MS. I scheduled an appt with my neuro for early April to discuss a differential diagnosis with him. It’s on the list for MS mimics.

Several reasons why I’m kind of wondering if it is:

About 2005 I started going to my doctor for shortness of breath. She thought it might be asthma & gave me albuterol.

Since a little after that (about 2006?), I also have had several appts for heart issues, including visits to the ER – racing heart & palpitations & feeling like I was going to have a heart attack. (And I wore a heart rate monitor for a few days). They just said they didn’t know what was causing it.

2008 I started being seen for night sweats (sometimes drenching). They did a chest x-ray & tested me for TB and did a CT scan. They found multiple hemangiomas on my liver. Are these and granulomas easily differentiated?  I know that granulomas are seen in sarcoidosis. They’ve also found hemangiomas in my spine on an MRI.

I seem to always have a low grade fever.

Problems with my eyes – optic neuritis, blurring, & burning.

Muscle weakness and pain off & on in my knee, hip, & sometimes ankle.

Changes in that time of the month.

Fatigue, excessive thirst, & high urine output  - about 2.8-3.0 liters (Urologist said this should be addressed by my regular doc, and she tested me for diabetes with a glucose test, but it came back negative).  

Swollen lymph nodes in my groin.

Cognitive issues.

Plus all my other MS type of symptoms, but I think you get the idea. I do have lesions in my spine (t-spine & c-spine) and in my brain. I was just wondering if I might have this since to me, my symptoms feel like they’re chronic.  I’m labeled as RRMS, but would my symptoms be worse or at least just as bad as my initial presenting “relapse”? Shouldn’t they be better, or am I constantly in a relapse for the last year or two? That doesn’t make any sense to me.

Hope some of you have some ideas or thoughts on this.  Sorry it’s so long…
Thanks,
Kelly

[Lulu54]

Kelly,
There is a wonderful site for sarcodoisis over at inspire.  I'll PM the address - this group really knows their stuff.  Just copy what you have written here and get their input.

I know just enough about sarc to be able to spell it .... LOL

hugs,
L

[kelly97]

Thanks Lu! I received your PM, and just posted over there.
I hope I get some good feedback from them.

I just figured that I should at least put all of this together and discuss it with my neuro, especially since MS is one of those rule out types of diseases. At least with all my cards on the table, maybe he can say yay or nay.for it.  I know he doesn't have any of this info right now for my background.

We'll see...
Thanks,
Kelly

[RazCarver]

I don't know anything about sarcoidosis or neurosarcoidosis. But I was wondering if you are still using albuterol?  if so, could it be part of the problem?

I have been on albuterol many times for asthmatic bronchitis. some of the side effects are chest pain,  fast, pounding, or uneven heart beats. tremors, low potassium that can cause uneven heart rate, extreme thirst, increased urination, muscle weakness and muscle pain.

just a thought if you are still using albuterol. I can't take it any more because I had these side effects.

Raz

[kelly97]

Hi Raz,

No, I haven't used it the albuterol in a long time. I only used it maybe 3 times and that was several years ago when my doc first gave it to me. I didn't really notice any difference when I used it, but I may have not been using it correctly.

Thanks