alex74
06-23-2008, 04:32 PM
I have been diagnosed in November 2007 and has been on rebif since. Symptoms havent disappeared and tend to worsen after injections (blurry vision, hand tremor) but things are rather OK.
I had to relocate from Sydney to London and just saw an MS specialist here and he really surprised me prescribing a battery of tests (PET scan, MRI with injection, blood etc etc) telling me that it could be neurosarcoidosis rather than MS and he needed to rule that out first before being sure I had to be on interferons...
Has somebody been in that case. It is true that my lymph node in the neck has inflated during my last flare-up and stayed that way.
I had to relocate from Sydney to London and just saw an MS specialist here and he really surprised me prescribing a battery of tests (PET scan, MRI with injection, blood etc etc) telling me that it could be neurosarcoidosis rather than MS and he needed to rule that out first before being sure I had to be on interferons...
Has somebody been in that case. It is true that my lymph node in the neck has inflated during my last flare-up and stayed that way.
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MSNik
06-23-2008, 04:42 PM
Hi Alex..sorry to hear you are going thru this. I actually think its GREAT that someone is educated enough to be able to talk to you about neurosarcoidosis- its so rare...but it would be unnerving after dealing with MS for this long to think that they might have been treating the wrong thing.
I am going to go with my gut here and ask you this...how well versed in MS was the doctor who diagnosed you? He was an MS specialist, right? Not a neuro who dealt with every kind of neurological disease? I ask this, because with neurosarcoidosis, the lesions are usually specific to a certain part of the brain..any MS specialist will know this and be comfortable ruling out neurosarcoidosis...I think you should trust this new MS specialist and let him run the tests and find out exactly why you were dx to begin with..
I think it will be okay, either way, what you are dealing with - youve already dealt with the worst of it...neurosarcoidosis is, in many cases actually treatable with steroids...so keep the faith, and keep us posted. Il be thinking of you.
and for the record, I was first told neurosarcoidosis and then told absolutely not by an MS Specialist- so I do know alittle about this disease.
hugs
Nikki
I am going to go with my gut here and ask you this...how well versed in MS was the doctor who diagnosed you? He was an MS specialist, right? Not a neuro who dealt with every kind of neurological disease? I ask this, because with neurosarcoidosis, the lesions are usually specific to a certain part of the brain..any MS specialist will know this and be comfortable ruling out neurosarcoidosis...I think you should trust this new MS specialist and let him run the tests and find out exactly why you were dx to begin with..
I think it will be okay, either way, what you are dealing with - youve already dealt with the worst of it...neurosarcoidosis is, in many cases actually treatable with steroids...so keep the faith, and keep us posted. Il be thinking of you.
and for the record, I was first told neurosarcoidosis and then told absolutely not by an MS Specialist- so I do know alittle about this disease.
hugs
Nikki