Promised Update - Possible lymphoma and CNS involvement

[anita]

I hope that they consider IVIG.  It is easier to tolerate, less side-effects, and most importantly...more effect for neuro involvement (lots of documentation). 

The Cellcept (Mycophenolate) may be an option for you as well.  It is also pretty easy to tolerate and quite effective for Sjogren's and even neuro involvement.  I used it for a short time and had good results with the neuro pain/symptom.  But I had to stop due to a bad infection (being immune deficient made matters worse for me).

If you search this forum for Cellcept, I think you'll find many here have used it.

You are still at the starting gate, so more tests have to be done and then to see more doctors.  I'm just so happy you finally have a Dx and seem to have doctors that are taking interest in this and want to help you.  I just hope they move this along quickly for you...as Sjogren's neuro damage can be permanent if not treated promptly.

Any word on the MRI scheduling ?

[MAT51]

Hi Anita. I learned yesterday afternoon that my CT with contrast of thorax down to pelvis is to happen on Tuesday afternoon. They haven't yet given me a date for brain MRI but I'm assured it will be within the next week or two. I'm fretting about the possibility of Lymphoma more now I admit. I have had an unexplained mystery vaginal discharge now for many months. Briefly it turned to severe yeast infection but now that has gone but the non itchy odourless out pouring continues unabated. What with the equally mysterious constipation and the swollen lymph gland in groin I'm having a bit of s worry fest I admit! Will be glad when these latest investigations are over with and results are conveyed.

[araminta]

For what it's worth, I had labyrinthitis very badly last year, it went on for several weeks, and started with me walking along a road and feeling I had to stay near a wall or I might fall over.   Crossing a road was awful as I felt there was nothing to give me my bearings.   Anyway I got medication for the labyrinthitis but also I found some exercises online which I think really helped, the main one I did was standing in our kitchen and focusing on a point out in the hallway, then walking towards it twisting my head slowly from left to right and back again, always focusing on the same point.   Then I'd do the same thing back to the kitchen, focusing on some point in there.   The first time I did it (only a couple of times) I had to go and lie down afterwards!  But I kept at it and gradually managed to do more little walks back and forwards, eventually I could do quite a lot and I could also move my head faster.

It doesn't feel nice the first few times you do it but I think it did help me.   Maybe get someone to stand nearby to begin with if you're frightened of falling?

[MAT51]

Thanks. I'm not denigrating the awfulness of Labyrinthitis, but my disequilbrium has been gradually worsening over a period of two years now. I was given exercises to do by my old physiotherapist that sound very much like the ones you describe. I did them for months to no avail. Maybe the neurologist will refer me for neuro physio when I see her in October. Various friends have suffered from Labythintis so I've had descriptions and I believe it's far more dramatic than mine - but usually short lived. Mine has only progressed to the point where I seem to lose my balance if I
move my head, just as the other neuro symptoms have changed or small fibre neuropathy has ceased to be painful and is now more tingly and crawling numbness everywhere. I should find out soon enough so will come back and tell you what turns up or doesn't. X