Well, I just got back from the neurologist office and the preliminary report shows peripheral neuropathy. The full report wasn't in yet even though it has been two weeks.
She said the neuropathy is not what is causing the swelling though, so I still don't know why my hands and feet look like the Pillsbury dough boys.
The lycria is helping slightly but its so expansive so she is giving me the generic for neurotin. I will be taking both for a few weeks.
She had me go over to the lab for a blood test to check for the markers in my blood. The phlebotomist was a complete wench. I was super sweet and explained that my veins are shot and that see would need to please use the butterfly needle and showed her which veins still work. She completely ignored me and jabbed the big needle into my main vein and there was an audible POP and blood started squirting all over and it HURT like nothing before. I was so angry. She had to rooter root around for a bit to even get any blood out. I can't even bend my arm now, there is a HUGE knot and its all black and blue!!
So, my afternoon is not going so well. I really wasn't expecting this dx as at my last visit she was pretty sure I didn't have neuropathy but my emg and needle test showed otherwise.
She told me that physical therapy would not help, that it was probably going to be progressive and that they can try to treat the symptoms but it will probably never go away. She said over the years, the pain is probably going to spread from my hands and feet towards my trunk.
She said if my blood shows the particular markers she is looking for, that they can put me on some other type of immune suppressant drug, different than the ones they use for ra. I was too shell shocked to get the details. However, she said if I want to try to get pregnant, do it sooner rather than later because the pain is going to get worse and she wouldn't start these other immune suppressant drugs until after I had a baby.
I have reports to take with me to the rheumy tomorrow morning. I sure hope the rheumy has some better news.
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Taking it one day at a time.....
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