Here is My Question:
A quick preface, for several years I have had sarcoidosis that has almost exclusively manifested in my eyes, the only exception being some minor skin issues at the beginning. Recently one of my eyes started drooping and my regular appointment with my neurologist led to him ordering a series of tests. The brain MRI showed several lesions (15+), spinal MRIs were "normal" (no lesions), and lumbar puncture showed a few bands.
I had a series of blood tests too. When I had the most recent appointment with my neurologist for results and a hopeful diagnosis, he said he couldn't give one because I am not having many overt, typical MS symptoms as he would expect and because the sarcoid could now be neurological. He referred me to another MS specialist which may take a while to get in to see, so my question is - what further tests can be done to help distinguish the two and determine what's going on? I feel like I have gone through a thorough workup and while I fully appreciate using caution to make the proper diagnosis, I am unclear on what other diagnostic tools will help.
My other question, if I may, is with my recent brain MRI showing so many lesions, is it expected to have a subsequent MRI now or a year down the road? When I asked my neurologist (who specializes in MS), he said I would not have others, which surprised me.
Thank you for your time and knowledge.
This is tough question to answer without being able to review the MRI scan images.
I always recommend that the original diagnosis of sarcoid be verified (was there a biopsy that proved it to be sarcoid?) or was the diagnosis made based on a chest x ray and high serum ACE blood test result?
If the sarcoid diagnosis is certain and there is clear evidence of it based on a prior biopsy, I would tend to favor the current diagnosis being neurosarcoidosis but that is very hard to make without reviewing the images.
Sometimes you can look at the spinal fluid CD4/CD8 ratio.
Regardless of the diagnostic uncertainty I think it would be prudent to obtain a repeat MRI brain with contrast at some point in the future, especially if the diagnosis is not certain.
It may never be possible to definitely clarify the diagnosis of what is causing the lesions on the brain MRI as there is no simple blood test for MS or other diagnostic test to confirm MS.
You can see oligoclonal bands in the spinal fluid in both diseases (neurosarcoid and MS) so that does not help differentiate them.
Benjamin Osborne, MD
Director, Neuromyelitis Optica (NMO), Neuro-Ophthalmology Clinics and MS/Neuro-immunology Fellowship Director
Associate Director of the NIH/Georgetown Neurology Residency Program
Medstar Georgetown University Hospital
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