Hi all, hope everyone is having a lovely spring. Have a question about MS vs SJS. The symptoms seem to really overlap and are very similar.
In the past couple of years things have really changed for me regading my health. i am unsure is it is progression of sjs or could it be MS?
My memory is OTL, confusion, speech issues. I forget words and how to spell and all kinds of weird stuff. I have a balance and dizziness problem. I become quite literally stiff and my legs and arms can just feel like useless heavy tree trunks.
Bladder problems too. Tingling, prickly itching and numbness.
So how does one know between MS and Sjs? I think I have read on here about a clinic at johns Hopkins that has found the two ilnesses are very similar except for treatment. Do any of you sjs'ers deal with these symptoms and are not concerned about MS and why? Thanks a bunch Sandra
Hi sandra :)
The diagnoses lies very much within the medical profession. I'm not medical but my understanding is that MS has some very definite markers and is easier to diagnose.
There can be overlapping symptoms although for the majority of SjS sufferers there is not the same degree of creeping paralysis that seems to accompany MS. In fact many SjS sufferers do not actually have CNS involvement. It's not ineveitable and I think its important that newbies know this. I realise, of course, that some do and am not trying to trivialise their predicament.
I'm sure you'll get some other answers but the dx has to be medical.
Take care - Scottie :)
Hi Sandra
Scottie's right that most Sjoggies never get any sort of central nervous system involvement with SjS. I really wouldn't want anyone to worry about this pretty rare aspect of SjS. Just dealing with the other 'gifts' that SjS brings is surely enough!
However, a few of us have SjS with cns involvement that mimics MS. Some of us come to a SjS diagnosis after years in limboland. Or years after an MS diagnosis that just doesn't fit. I'm one of those people. Diagnosis is based both on fitting SjS and not fitting MS: blood tests to confirm SjS, dryness symptoms which fit SjS; MRI and LP which don't confirm MS, even if there are some white patches on the MRI. It's much more complicated than that but those are the basics.
The treatments are also very different although it looks as though things might be changing. DMARDS and chemotherapy to suppress the immune system are used for SjS with cns involvement, and these are now being considered for MS.
Hope this helps. Post more questions or please feel free to message me if you'd like to discuss this further.
Take care - Chickpea
I have not been formally diagnosed with SjS but have many of the symptoms, minus the blood work results. I do have many neurological problems from a lesion to the spinal cord as well as long history of neuropathy. Your symptoms sound like MS, so you might want to pursue more workup with a good neurologist. Sometimes, what I find, is the neuro and rheumy docs do NOT interact and they are in their own little fields. I've been struggling for years as my neuro symptoms came first and SjS later and now very much overlap and am spiraling down. Feel like I need disease-modifying drugs, but these are different drugs (chemotherapy agents/immunosuppressants) than just those used for MS. So it's important to have the SjS diagnosis, not just an MS diagnosis. Try checking out Dr. Birnbaum, he looks very promising. Just got his info. He is both a rheumy and neuro doc.
http://www.hopkinsmedicine.org/neurology_neurosurgery/experts/team_member_profile/D2AE1BB5C0D4684E9A70D7329318EBD0/Julius_Birnbaum
Hoping you get answers,
Karin
Wow..this adds more confusion to the problem. 4 neuros in the last 20 odd yrs have told me it's MS. MRI/spinal tap helped confirm that. After reading one of the posts though, it now sounds like even with white patches on MRI that it could be Sjs which I haven't been able to get a dx for yet. My symptoms over the last 3 yrs are definitely more Sjs and I've always wondered if the MS dx was wrong. It was only the first couple of yrs after the MS dx that I had classic MS symptoms. I know if I go to the neuro with this that he'll just stick with his decision. Are there any objective drs out there that will really listen to ALL the symptoms?
Even though the white plaques can happen in both MS and SjS, the fact that you had confirmation from a spinal tap might indicate the presence of oligocolnal bands (O-bands) that weren't present in the blood serum, which indicates CNS inflammation unique to the nervous system (not systemic as SjS would be). While it is possible to have SjS only in the nervous system, it's rare enough that it would probably lean strongly toward MS instead, especially if you have glandular symptoms of SjS.
I hope this at least gives you basis for a discussion with your neuro.