Some Answers..?? maybe

[Wobbly]

well, I went back to the Rheum I saw a few weeks ago.  He said he has never seen these types of results before and he's been a Dr for quite a long time.   What he is thinking is either "Neurosarcoidosis" or MS.... I do show granulomas in my systems which would be Neurosarcoid...I will be having more test done.

and another Brain MRI to see any changes... this Dr makes me feel like he will help me find the answers I have been looking for for over 3 years.  I'm praying it works out...just to have a decision and some form of treatment.  

I'm still sore and have more pain meds to help...but do feel better emotionally since my hubby and I have seen this Dr and feel he will not just send us away.... I will keep you informed on what is happened..

take care.. thanks for being there for me... I appreciate you guys so much in my life right now and always will.

andie

[Wobbly]

thanks everyone... I do feel that I have found a Dr that will check into everything...(it took a few years and many Drs),

I'm hopeing that this is finally going to give me some answers and treatment of some kind.  Of course, I hope it's the easier treatment one...hehehe

I will keep you updated on how things are going.  Hope all is well with you.

I'm not sure why the pain has gotten so bad and I feel like I'm swelling up...my fingers etc... I guess I'll drink more water and stay away from salt...see if that helps...

thanks again...take care

andie  

[6-paq]

I'm glad that you have finally found someone that will search out those answers for you!!

I've also read that neurosarcoid is more treatable.  I was also thinking that you could have granulomas outside the CNS as well as in the CNS?  Maybe in the sinuses, etc.??   If so, then possibly there would be more evidence for the neurosarcoid.  Unless, I'm confusing neurosarcoid with sarcoid.

Take care and I hope the paid meds help you!
Pat :)

[spastic]

Hey Sweetie, it sounds like he is a really thorough Dr, so glad that you have him!!!  He does sounds like a dream Dr for sure, can I borrow him when your done? :)  I really hope you get answers soon and find relief in them.  Definately keep me posted, my Dear.

Love,

Ada

[Rena705]

Hey sweetie...it sounds like you have actually found a dream dr. that want to help you!  Congratulations and I hope that he will stick with it and finally get you some relief!!

You deserve to finally have some answers after so long and I am rootin' for ya!

Lots of Hugs,

Rena

[Wobbly]

Hi, the Dr says he needs more confirmation.... I have MS symptoms, but NEUROsarcoid could have to same symptoms...

I have granulomas in my bone marrow, and two monoclonal band in the gamma region??
forgein to me..heheh...he says that is what stumps him...

he need more proof of granulomas in my CNS...but doesn't want to do a brain biopsy unless he has too...so I'm having another brain MRI..he said it's very unusual results that he hasn't seen and will get more info.

so, I guess I'm waiting again...they just told me to take more Tyn 3 when needed and might put me on some 12 hr Pain med??  didn't say what type.  

It was so much info at the time, I didn't ask what meds?  I go back on the 27th for more tests.

thanks
andie

[Quixotic1]

Hi, I'm glad our Weeble is still with us.  Neurosarcoidosis is not something I know anything about.  That or MS - what an interesting differential.  It is my understanding that Sarcoid is far more treatable than MS, so that would be good if it's true.

I wish you were feeling better.  Did the doc give you any timeline about when he would know?

Quix

[Wobbly]

Hi... I haven't got that much info on it yet.  But I hear it has alot of the same symptoms of MS.... not curable, but maybe treatable.  

I will find out more when the Dr know for sure which it is... thanks

andie

[LLWB]

Wow, isn't it amazing when you find the "right" doc? Too bad we have to go through so many first. I guess we need some for the Friday night "weenie" roasts.  What is neurosarcoidosis? Does it cause the same sx as ms? Glad your hubby was able to be there for you. Take care, and keep us in the loop.     Maggie