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ms and sarcoidosis

I was diagnosed with MS in 1995 and today have been told I have Sarcoidosis (lung biopsy confirmed this).

Is this common to have both illnesses? Anyone else have both? I now wonder if I really do have MS…

As both are rare, I would have thought having both is even rarer, although I think both are auto-immune related, so I’m not sure if having one slightly increases the risk of the other.

I do know CNS sarcoidosis is one of the differential diagnoses of MS. A friend was diagnosed with sarcoidoisis about the same time I was diagnosed with MS, and we underwent many of the same tests.

Like you, I would now be questioning the initial diagnosis, although I generally take the view that MS diagnoses are so cautiously given that mistakes are uncommon. It doesn’t mean it couldn’t happen, though. Especially as it was some years ago, and diagnostic technology - especially scanning - has probably come on quite a bit.

All I can suggest is that you ask the question: Does this cast any doubt on your original diagnosis, or do BOTH diagnoses stand?

I seem to recall MS and sarcoidosis in some respects seeming almost the opposite of one another, as I thought sarcoidosis could be associated with excess Vitamin D, or something like that, whereas MS has long been associated with deficiency. So I would be surprised to find both in the same person. Don’t quote me on that, though, as I may be getting my facts muddled…

Tina

x

Thanks Tina. You say things that I’m thinking too. I next see my neurologist at the beginning of July so I’ll question him then!! Many thanks for the reply x

Hi

I haven’t had a lung biopsy to confirm, but the opthamologist suspects I have Sarcoidosis due to positive chest x-ray, blood test, bad eye floater due to uveitis detachment and have now developed sores inside my nose . I’ve been diagnosed with MS R&R for over ten years. Is it true we can get both or could it be the original MS diagnosis is incorrect and it is actually Neurosarcoidosis,

I really don’t know what to think at the moment and don’t think I should start to worry or should I until I have a definate diagnosis, although IF I had a choice of the two think MS would be my preference as sarcoid looks worse as it attacks all organs - is this correct, think i’m worrying myself by not knowing.

How do you feel about this??

Hi I read an academic article that showed 10% of MSers in the study they did actually had neurosarcoidosis. It also mentioned there are few neurologists that are specialists in neurosarcoidosis because it is a rare condition. Employment as a MS neurologist would be much easier to find.

The 10% had neurosarcoid and not MS.