I went to see the vasculitis specialist at Cleveland Clinic, and I am so improved recently that she could not dx with certainty, but thinks it is an inflammatory arthritis as the primary disease with some vasculitis and fibromyalgia. She recommended stopping meds so it is easier to dx! Of course after going in circles for 2 yrs I have finally been on a med that seems to be working (it took 6 months) so I didn't want to do that.
I went back to my neuro and rheum and both agreed I was much improved and I should continue on the meds.
Unfortunately, my nerves are still malfunctioning so we are still experimenting with meds for that.
I had more extensive testing at CC and had a number of abnormalities (finally). I have looked them up but still found the info hard to understand. Anyone know anything about low IgG and low IgM? Also had a high Neut% and low Lymph% but haven't been able to figure out what those are.
I know some of these indicate myeloma, but they seem fairly certain it is not that. Having some tests to make sure. Thanks for any info.
Laker
Hi Laker, good for you for sticking up for continuing the meds! Honestly, you are feeling well and so they wanted you to stop taking the meds so you would feel bad? What kind of logic is that? LyndaLaker, I don't anything about it but I wanted to say how good it is to see a fellow ra'er feeling better. I hope someone can answer your questions, maybe can you call the nurse and ask her?
Best wishes
Laker, I'm so glad you are feeling better! Did the doctor really think you would stop the meds that finally made you feel better? Makes you wonder about their logic doesn't it?
I know a little bit about IgG, IGM, and I think the 3rd one is IgA. I see a hemotolgist every 3 months because of HIGH IgM. But I see yours are LOW. I don't know what that indicates.
The high IgM protein can indicate lymphoma, which they thought I had when it first showed up. After CT scan of chest, abdomen and pelvis, a "skeletal survey" countless bloodtests, they decided I needed a biopsy. This was done with CT guidance of an area between pancreas and adrenal gland. (and yes, a biopsy in the area of the pancreas scared the poop out of me) However that mass turned out to be an "adrenal adenoma", benign.
Oh, in the middle of all that, I also had another bone marrow biopsy. Since they couldn't get "tissue sample proof" of lymphoma, it was decided that I have a condition called "MGUS" which stands for (...drumroll) monoclonal gammopathy of uncertain significance. Just means I am a bit more likely to develop lymphoma than most people. Not something I worry about...really.
The way I see it is that they test my blood so often (and always will, since I will always have this disorder) if I develop lymphoma, they will know right away and can start treatment. AND the treatment is Rituxan, which would also put my RA into remission.
WHEW...Sorry I took so long
Also the lymphs, neuts, and eos are types of cells (white, I think, but not sure)
Hope I didn't confuse you too much. When I first started getting some answers about my weird blood, I wanted to know EVERYTHING!
Good Luck, Sweetie.
Try not to worry!
Big hugs, Nini
Laker- glad to see you are staying on your meds. it does make sense. Its hard when you are DX then UnDX . I hope you get some answers soon
Take care