Well I stopped in to see how you are all doing. I haven't reallyfelt well enough to be online. The pinched nerve in my back has gotten bad enough that it is very painful to walk or sit upfor any length of time and I'm having trouble lifing my toes and feel like somethin is stuck between my big toe and the next one. the leg is swelling bad too.
My stupid pet scan at Mayo was all screwed up, done an hour late after half the tracer was gone. Despte the negative testthey predicted, Ihad uptake inthe armpits and buttocks. Still Mayo is not pursuing anything,not even suggesting a biopsies, though my family doc is thinking maybe in a while, after I get my back surgery, its something to look at. Mayo tried to tell me I had recent injections in my buttocks, which I hadnt, not for years now, since I've been getting pill tapers. Anyway, they don't believe me and attribute the uptake in the lymph nodes there to be due to "injections", which is rubbish. UNfortunately this is where I have alot of pain. Thearmpits were a surprise, though they have been sore and swollen for years now. The big nodes in my neck, one which s pressing on my jugular vein off and on and causing a lot of dizziness and strokelike feeling andalso affecting my hearing in that ear off and on, did not have uptake, they blame sjogrens, but those nodes have been bad for so long they are likely calcified. I don't know that they could really show much uptake.
The oncologist at mayo said their cutoff for lymphoma was uptake of 2.3 and mine was 2.1. I tried to explain that my PET scan was not done properly, they did not get me back in time for the right amount of contrast to be in me, so wouldn't it be higher? I'm really disgusted. I told my doc here that all Mayo did was run up a big bill, and she said that's what most people say. I was really impressed wth the liver transplant guys, and I liked my physical therapy guy, but the rest were pretty awful. If I do have lymphoma, its likely the slow growing, indolent lymphoma, since I've been having problems for so long. There are so many places to biopsy, its a problem too. I do think I have a right to know if I have cancer, since I've been so tired and my white cells up. All they say is that I don't look sick. It would be good to know because I could maybe switch to a biologic that would help with the autoimmune disease and possible lymphoma problem too.
It so hard having sjogrens and then this kind of stuff. some of the lymph nodes n the neck they reallyhave trouble getting out, like the one on my jugular vein. IF it gets worse, I don't know what I'll do. Complications of swollen lymph nodes you don't think of.
I hope you are alldoing okay and I wish you all the very best.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids