Old member back five years later...

[michelleislay]

...with a dx finally.  Turns out back then I had a copycat and thought itay be useful to mention here in case anyone else ever finds themselves in the same predicament.  I was being investigated as if I had MS but all MRIs etc were clean.  Turns out now many years later I have pulmonary sarcoidosis which began as NERUOSARCOIDOSIS many years ago.  Symptoms back then were numbness, vertigo, loss of hearing, altered sense of smell and taste, fatigue, brain fog and some eye troubles.  To any old friends still here, a giant hug and hello, xo Michelle

[michelleislay]

Oh woops, typos...that is neurosarcoidosis.

[aspen2]

I'm so glad you finally have answers, Michelle! I was just recently dxed with ms after three years of limbo.   Neuro sarc was ruled out twice because I had no lung changes, and supposedly lesions would all be active at the same time. I find your post interesting.  Curious though because neurosarc does cause lesions -- did they show up eventually?

Not an old friend, but nice to meet you and thank you for coming back to update on an outcome other than ms!  Often we don't see other outcomes so it's important information :).

How are you feeling?  (((hugs))) and sorry about the dx, even though you have answers now.

[Dagun]

Hi Michelle,

It is good to hear that you have a diagnoses, I´m probably being diagnosed with Sjogren in my CNS, after 5 years in limbo. I have about 40 lesions and low ANA in blood. Thank you for letting us know, I think it is so necessary to hear how this goes for people that have been here in limbo looking for answers. Thank you! Wishing you all the best.
Dagun

[michelleislay]

Hi to Dagun and Aspentoo,
Nice to meet you both.  I am really well for the most part.  My case.has been confusing docs for a.very long time.  Its for sure strange that no lesions were seen.  I'd have to go back and see but I'm pretty sure they were all without contrast which may have contributed to the lack of visible lesions.  As this is all in hindsight neurosarcoidosis "diagnosis" is only what my docs say it must have been in light of everything else that has unfolded...there was never a.biopsy done of nerve tissue to prove it and at the time no one had thought of it at all.
Slowly my (neuro) symptoms dissipated, my hearing even improved and I felt better for sometime.  Then I began with stridor, which prompted an initial xray that lead to suspected pneumonia then suspected tb and an enforced isolation that nearly made me miss a trip to Kenya with my family!  All very dramatic but I know that is what being in limbo is all about.  
All the best to everyone here, any one know about red, Paula or quix?  
Enjoy the day, xo