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Re: MS or Sarcoidosis? I'm so confused!!

Posted By CCF Neurology MD:NT on September 10, 1998 at 22:34:26:

In Reply to: MS or Sarcoidosis? I'm so confused!! posted by LT-K on September 10, 1998 at 14:24:22:

I've posted here a few times before, asking questions about MS, but now I'm
so confused about what's happening.
I've been having problems for a little over 7 yrs....balance problems, muscle
spasms, numbness, tingling, & other weird skin sensations (like cold water
dripping down the side of my calf, intense itching on my right thigh, "spiders"
crawling on my nose or wherever), & extreme fatigue. The muscle spasms, fatigue,
balance problems have all gotten worse during the past 6 mos. My new neurologist
said that my last set of MRI's from '97 didn't look good, but the new ones I
just had done a month ago, along w/ a spinal tap, all came back normal. I've
been treated as having "probable MS" for the past 4 yrs, & have been on
Betaseron for all this time. My new neurologist said that my blood work done
at the same time as the new MRI's & spinal tap show an "abnormal" level of some
substance in my blood (I didn't catch which one, neither did my husband, as
we were so stunned that my MRI's now looked normal), & she's ordered chest
x-rays & cervical spine MRI's, looking for Sarcoidosis.
I'm really confused now. I've tried looking up various sites on the Internet
about Sarcoidosis, but most of them talk about what happens to your lungs -
& as far as I can tell, I've had no problems w/ my lungs! The symptoms they
describe on these sites don't sound like anything I'm going through at all!
I don't want MS, I don't want Sarcoidosis, I don't want anything! I'm a dancer/
teacher, I'm in the process of selling my studio cos I just can't do it anymore
(which is just killing w/ me w/ grief to do!!)....I'm frustrated, I feel so fatigued all
the time, my muscles just won't do what I've spent 35 yrs training them to do
anymore, & I still don't know why!! I'm so sick of having tests, just to find
out that they come back "normal". I'd never heard of Sarcoidosis until yesterday,
neither had my husband (a pharmacist)....we're both shocked & confused, & I'm
almost at the end of my rope!!
What is Sarcoidosis, in terms I can understand? Can it look similar to MS? Is there
a cure for it? Can it last 7 yrs? As bad as it is to feel this crappy, it's
worse not knowing WHY!!

Dear LT-K:
You are correct in your impression that sarcoidosis is usually a disease of the lungs. Sarcoidosis is a pathologically defined condition in which a specific pattern of abnormality (non-caseating granuloma) is found in any of various organ tissues of the body (commonly lungs, lymph nodes, skin, salivary glands, and somewhat less commonly liver, muscle, nerve, eye, meninges, and the brain, amongst others), in the absence of bacterial or fungal infection. Only a small minority of cases of sarcoidosis have nervous system involvement, and this is termed neurosarcoidosis. This is indeed a very rare problem. Neurosarcoidosis is diagnosed in one of two situations:
1. The presence of typical neurological features of neurosarcoidosis along with documentation of typical systemic sarcoidosis (usually pulmonary - commonly diagnosed on chest xray, gallium scan, or bronchoscopy), or
2. The demonstration on biopsy of typical sarcoid pathology (non-caseating granuloma) within the nervous system, even in the absence of demonstrable systemic sarcoidosis.
Approximately half of all neurosarcoidosis cases fall in each of the two diagnostic categories noted above in most series.
Neurosarcoidosis is typically a disorder of the meninges, and effects on the brain usually are a due to secondary involvement or spread from the meninges. Hence it is rather unusual to have neurosarcoidosis with a totally normal cerebrospinal fluid. Also, although neurosarcoidosis is commonly mentioned high on the list of differential diagnoses of MS, such an MS-like presentation of neurosarcoidosis is not common. The most common presentation of neurosarcoidosis is cranial nerve weakness (facial weakness usually).
The blood test that you do not recall may be the ACE level. This is commonly used as a screening test for neurosarcoidosis, but is quite insensitive, and also quite nonspecific.
Neurosarcoidosis varies widely in severity and in tempo of progression. The intensity of therapy (usually steroids and immunosuppression) is  usually proportionate to the severity. The fact that you have had symptoms for 7 years would mean a very slow rate of progession for neurosarcoidosis (if you did have it, which is far from proven). This should be reassuring to you, and probably make you feel less compelled to seek an immediate diagnosis.
Good luck!
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