Quote:
Originally Posted by en bloc
Thanks for the link.
I don't see SVID mentioned. Your MRI was dismissed, if I remember correctly as being non-specific. Do you have the actual report from the MRI? If so ,what does it say? I went back to posts from long ago and you reported that it only showed SVID that matches your age and stage...no lesions. But I don't know if this was what the doctor had told you then (and we all know how they like to minimize findings at times) and now you have seen the report and know more.
But honestly as I said before to help put your mind at ease a bit, SVID doesn't have many symptoms reported, except dementia/memory/etc in significant cases of SVID. It doesn't create a major CNS condition. I interpreted that article to be more about other, more serious, CNS conditions. And although they use immunosuppresion for serious CNS involvement, Rituximab is not in this class, per se. Rituxan is a biologic agent for monoclonal treatment, to target B cells...it is not a general immuno-suppressor like Imuran, Cellcept, Cytoxan, etc. And I just read an article from our National Institute of Health on Rituximab for CNS of primary Sjogren's and it was didn't have great results ( Rituximab in central nervous system manifestations of patients with primary Sjogren's syndrome: results from the AIR registry. - PubMed - NCBI)
I would just wait and see what the MRI finds and see what the neurologist has to say (not that you were very impressed with her dismissal of your condition)...maybe ask for a second neuro opinion if you are permitted that in your system.
But don't jump with the Rituximab until they can tell you what symptom(s) it will improve (and you find something confirming this online). Because your vertigo is obviously from something else (Sjogren's related for sure, but not SVID), and this is the most debilitating symptom for you, if I'm not mistaken.
I so wish you can get hooked up with someone that has more experience with Sjogren's. Maybe the new rheumy (to replace the retired one) will have more knowledge on this subject...let's think positive that he/she will and help get you the treatment you need. Do you even have a follow up appt for a new rheumy? |
Thanks for giving me your thoughts. You are right the SVID was non specific in the previous neurologist's report - it literally just said "small vessel disease in keeping with her age". Because it was from a different hospital the rheumy had to search it out during my appointment. He found it and wrote that Sjogren's would certainly account for SVID of this kind and commissioned a second MRI for me, 18 months later. I think it might be easier if I just started another post with the contents of the letter because you are much more sharp than me and will understand the implications better if you can read what he's actually saying. He told me he thought that my version of Sjogren's might be affecting my CNS.
I assume this was because of the disequilibrium I reported as my worst symptom presently - because he referred to this in his letter. He saw for himself that I struggled locating my chair following the examination. But he's a rheumy not a neurologist and he probably isn't qualified to assess this properly so he addresses the neurologist in the clinical letter. I didn't get sent a copy of this letter, my gp printed it off for me. So I'm just interpreting it for myself now in lieu of any other information.
I did phone the hospital for results but he's on annual leave until Monday so the CT report is on his desk - MRI not through yet. The secretary agreed that I can feel reassured that if anything suggesting lymphoma had flagged up in the CT report I'd probably know by now as the radiologist would have alerted one of his colleagues. So good news in this regard at least! My next rheumy appointment is booked for end of November but they can expedite it if there's anything urgent to be discussed. I asked about a replacement but she wouldn't comment. Rheumatologists are like gold dust in the UK so he won't be easy to replace.