[hopeful]

Hi Everyone,
I have a few questions. I shared not to long ago that I have been diagnosed with Sjogrens (only positive test was eye test). I also had a positive small nerve biopsy test. My neuro doc sent me to rheumo who is currently treating me for what he calls probable sjogrens. He put me on Lyrica 25mg and Plaqunil 200mg along with cymbalta 60mg and synthroid. I do take Tramadol 100 PRN for pain. The pain is becoming so much worse. I do find myself needing it more often. I now have trouble with sheets touching my skin. Alot of fasciulations (not sure if spelled right). I still work but I have to put lidoderm patches on my hips because the clothes touching my legs hurts. I feel like my muscles are becoming weaker. Rheumo says to keep exercising or I will lose it. I can't because I hurt too bad for days after. Anyway not complaining just giving background.

My question is should I be seeing a neuromuscular doctor along with rheumo. My first symptom was the neuropathy.

Also, I have heard people refer to a bar they put on their bed to keep the sheets off their skin. Does anyone know what they are called so I can look them up?
Thanks to everyone for all the help I have gotten here! hopeful

[hopeful]

Originally Posted by hopeful

Hi Everyone,
I have a few questions. I shared not to long ago that I have been diagnosed with Sjogrens (only positive test was eye test). I also had a positive small nerve biopsy test. My neuro doc sent me to rheumo who is currently treating me for what he calls probable sjogrens. He put me on Lyrica 25mg and Plaqunil 200mg along with cymbalta 60mg and synthroid. I do take Tramadol 100 PRN for pain. The pain is becoming so much worse. I do find myself needing it more often. I now have trouble with sheets touching my skin. Alot of fasciulations (not sure if spelled right). I still work but I have to put lidoderm patches on my hips because the clothes touching my legs hurts. I feel like my muscles are becoming weaker. Rheumo says to keep exercising or I will lose it. I can't because I hurt too bad for days after. Anyway not complaining just giving background.

My question is should I be seeing a neuromuscular doctor along with rheumo. My first symptom was the neuropathy.

Also, I have heard people refer to a bar they put on their bed to keep the sheets off their skin. Does anyone know what they are called so I can look them up?
Thanks to everyone for all the help I have gotten here! hopeful

I don't know if anyone saw this, so I thought I would try again. Any answers?
Hopeful

[cyclelops]

Many rheumatologists will NOT see some one without a positive antinuclear antibody test and/or positive SSA, SSB. Labial salivary gland biopsies don't seem to impress them. Eye tests even less.

I have higly + ANA-nucleolar, very +labial salivary biopsy, and +skin biopsy for PN, +biopsy for mild myopathy, labs disturbed looking like distal renal tubular acidosis, abnormal autonomic testing, diffuse esophageal spasm by manometry, (and probably some dumping syndrome) atrial fib, then add all the symptomatology of Sjogrens. I have had no luck with rheums, and was treated with IVIG via the neuro, who now feels that my symptoms have progressed 'beyond' Sjogren's. I am on sabatical from all treatment right now, until the docs get their act together, since IVIG was causing very severe headaches after several years of treatment. For now, I am treating my pain, my metabolic acidosis, and other issues as they come up. I am seeing an endocrinologist for an eval, because I haven't seen one yet and am concerned about my glucose levels which have at times been as low as 42.

In the case of negative ANA, I am not sure what is causing what, if small fiber neuropathy is the cause of Sjogren's like symptoms.....I have yet to be convinced that Sjogren's causes PN. Very few SSA-SSB+ patients present with neuropathy as a major issue.

There are sooooo many causes for keratoconjunctivitis, many of them very serious and treatable issues. It might take a while to sift thru them. I am still looking.....argh.