I haven't posted in a while, but I thought you might find this a little ironic or funny in a way. I went to Mayo through the liver transplant center for evaluation of my liver disease progression and also to try to get an adequate diagnosis for the multiple things that are wrong and get evaluated for more spinal surgery. Anyway, among the consults was the rheumie.
So they did the usual bloodwork everyone else has done and it came back with positive ANA but my inflammatory markers were all near normal as were my sed rate and CRP. So I go in there and I've submitted all the salivary gland biopsies and the gallium scan and show him the pigment problems and explain the MRIS and all and he does a quick pressure point exam and tells me I have fibro! Like, duh! I'm in tremendous pain from my back and now my shoulder (I can't lift my left arm above my shoulder and it brings tears to my eyes) and have all this other stuff and he comes up with fibro. After 14 years now, I make it to the "Emerald City" and the wizard tells me I have fibro.
Well, so he started questioning my ai diagnosis, and I explained that these tests had been abnormal, and they had been submitted to Mayo, and that they had normalized now because I was being treated for AI disease and not flaring right now. He had some trouble getting that. Of course the stuff is normal because I'm under treatment. And, yes, I have fibro, and sjogrens, he finally agreed after I made him look at my salivary gland bxs and eyes on the gallium scan. Then he told me that, well, sjogrens is just like dry eyes and fibro doesn't cause any physical damage, so I can't have any physical damage, at least from those things. At this point I seriously began to think he was messing with me.
All joking aside, I do think he has something in mind. They did alot of bloodwork (about
20 small tubes) and are checking my sensitivity to certain substances, which might explain why my bloodwork looks normal but I'm deficient. He felt the skin on my fingers, which are quite plump now since I gained twenty pounds in less than two months, and the skin is a hard bump, not flexible. I hadn't noticed that. He talked to me about
connective tissue disease and though the ortho sent me for nerve conduction studies for my left shoulder and arm, the rheumie is getting the results. They stuck needles in my muscle all the way through to my nerves, shot electricity through it, and then made me move my hands and it hurt so bad. It was horrible torture! I have some nerve problems that have shown up in tests before so perhaps he will be able to give them a name, maybe it's fibro!
I hope you are all doing as well as can be expected and that this post finds you all laughing, at least a little, to keep from crying.
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn