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Originally Posted by en bloc
Thanks for the update.
I felt certain this neuro would change her tune after learning of your Sjogren's Dx...and she did to some degree.
However, her fear of biologics/treatments may cost you in the end.
IVIG is KNOWN to help autoimmune based neuropathy/SFN and tons of documentation on this subject. The guidelines for Scotland use of IVIg is 4+ years old...and likely has been updated since that time. It is definitely worth inquiring about this. However, they typically don't approve such a treatment with 'clinical' only Dx...and would likely require confirmed biopsy showing SFN.
There is also plenty of documentation for use of immunosuppression in this type of condition...with positive results. Cellcept would be worth considering. Doing nothing will guarantee further progression...so trying something is worth at least slowing this progression. I don't understand her comments basically saying you can't be helped at this stage...that's an assumption with no logical documentation...especially since these meds have a history of helping. Otherwise, no one would be getting treated across the world...and that is just not the case. We ARE getting treated and it's helping. There is some damage that becomes permanent with Sjogren's, but certainly not all, as she seems to think. O hope you don't give up. Push for some sort of treatment (other than masking with Lyrica) to slow progression and reduce symptoms...at least TRY.
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Thanks Enbloc. I will keep trying - can't give up after getting this far don't worry! What do you think could be causing the weakness and pins and needles in my arms if not SFN? Do you think there's any chance that something will show up in my nerve conduction tests this time? My reflexes were fine when she checked my knees but didn't respond when she checked my arms/ elbows. I feel my elbows are at the heart of things but it seems odd it's in both elbows and pins and needles is in both hands and night knuckle pain in fourth and fifth knuckles on both hands - although marginally worse on right side always.
There was a fundamental contradiction in what she was saying. She told me that if I'd been on immunesuppressants now then it would be very hard for her to gauge changes and progression of symptoms - and yet she wants me to try Pregabalin/Lyrica? She calls drugs such as Rituximab "sinister" but is happy to dole out drugs such as Gaberpentin and Pregabalin - which as far as I can tell are mind altering?
I did listen to my recording of this consultation and my husband commented that I kept rattling on about the punch biopsies. As you can see in my reply to Bluesfan I have explained to her in a letter that, even with her clinical judgement that I have SFN - in my experience this will always be "presumed" without hard evidence to confirm.
She said "we can't keep cutting bits out of you on a weekly basis?! This isn't necessary when I believe you and am happy to change this from presumed to a formal diagnosis now we know you have Sjogrens ". But where funding for IViG is concerned it would probably be a different matter as you say. On the other hand a skin biopsy wouldn't take long to do and yield answers, so I think the nerve conduction tests are more urgent and, awful as it is to say, I need these to be positive in order for her to support me taking further proper medications. Fingers crossed, if only I could! Mat x