Originally Posted by en bloc
Since you have dry mouth and neuronopathy, you should not discount Sjogren's with just a Schirmer's test. You could try to inquire about labs drawn for Sjogren's (SSA & SSB). I believe even with the NHS you can get lab results...just not as easily as in the US. The lab where they put the specimen in the sand was likely for cryoglobulin.
My symptoms include dry mouth/eyes, neuropathy pain, and severe autonomic neuropathy (which involves heart rate, BP, temp control, urination, gastroparesis, balance, vascular spasms...and the list goes on). I also have APS (antiphospholipid syndrome) which is a clotting disorder that has caused 3 strokes.
I have a whopper list of meds...6 just for the heart & BP. I also take Plaquenil for the Sjogren's, several GI meds, blood thinners, and minimal pain meds. I did IVIG for 9 years but stopped after a severe case of aseptic meningitis from it. I may try again one day. I also had fairly good results from Cellcept (cancer drug/immune suppressant) for the short time I took it. I did not have luck with antidepressants, as you have. I also tried anti-seizure meds like lyrica and neurontin, but again they didn't work. The damage caused to the dorsal root ganglia from Sjogren's is irreversible and there is no known effective treatment as of now. The objective is to reduce pain, which you apparently have been able to do to some extent.
Your treatment may not be different if you pursued the cause of your diagnosis...other then plaquenil to treat and slow progression of the Sjogren's itself, or use Rituxan.
I am curious about one other thing. What test confirmed the neuronopathy? I am not aware that a skin biopsy can diagnose this by itself as it is used to determine small fiber neuropathy. Is this the test they said confirmed it, or was it a conclusion?
En gosh you have such a lot to contend with I don't know how you cope with it all, I thought I was bad with the neuropathy, palpatations idiopathic, beta blockers doing the job fine leave alone, multi nodular goitre, monitored for a year doing nothing fine leave alone, for a while though I have been having dizzy spells lately getting more frequent and low and behold palpatations, also, had a few UTI's as well, two weeks ago was shopping passed out and hurt hand taken to hospital, was kept in till next day repeated bloods done heart monitor on nothing, was at hospital today for Ivig spoke to ward doctor.....oh dizzy spells will be due to you fighting off infection thank goodness I see my neuro in two weeks time sorry for rambling on needed to get things off my chest.
You asked what test cofirmed the neuronopathy I surmised it was the skin biopsy as the neuro spoke about the dorsal rooot ganglia and i hadn't a clue at thetime what he was talking abot and because I still don't understand it all yet, I am a bit nervous as I destroyed the letter I got from the professor which mentioned anti-Hu antibodies and cannot remember whether it stated that I showed with or without so now thinking that is why the dx is neuronopathy what are your thoughts?(be totally honest), I would appreciate if you have time if you could give me a few pointers what I should be asking, my problem is I am not a pushy person and a bit shy.
How are things with you at the moment, are you in a lot of pain, how do you cope from day to day, do you have family living with you, do they understand? Hope this finds you in not to much pain..........tc .......Marie