Oh Kelly - what a roller coaster you're on right now. Really hoping this gets figured out for you soon!
My EMG / NCV tests were this morning. The neurologist that did it is pretty much 100% for sure that all of my symptoms are related to multiple sclerosis. My EMG & NCV tests came back normal. He said this is typical of someone with MS, since the EMG tests for peripheral neuropathy and neuro-muscular disease. And MS is a disease of the central nervous system, which wouldn't show on this type of test.
Plus, he told me that spasticity is related to my central nervous system, which again would be MS. I was telling him about how my biofeedback on my muscles show a muscle tone/spasticity of almost 14 all the time at PT during "rest" when it should only be about a measurement of one (like my muscles are going to rip themselves off of my body). Again....he assured me it has to be MS. Maybe I just have random Lupus-like symptoms that aren't related to Lupus?
I'm going ahead with the carcinoid syndrome 5HIAA test all day/night tomorrow. Even though I really think that's going to come back negative. At least I know now with the blood tests and the EMG / NCV that there's really just a sliver of a chance of anything else besides MS, which I guess kind of makes me relieved. Although, I still wonder if it's PPMS instead of RRMS and so does my PT....
Thanks everyone.
Still no answer sorry! :(
Glad you don't have Multiple Myeloma (or related cancers) :)
Dear Kelly,
The confusion is so diffiicult time to go through.
I know you hoped for some answer. Someimes no answer is some kind of answer.
I had two times EmG and the other one of the nerve.
I thought they were easy , espicalliy comparing to some of hte things you go through. Try to not fret.
Your answers are there somewhere.
Keep faith. amo
I do know some of those tests take some time to show positive and I understand that sometimes we can over-lapping autoimmune diseases.
After reading everything though, I became concerned that they are not looking at the big picture. I want to look up polymiositis.
Oh - have you thought of going to one of those specialty clinics and getting a once over? My Mom has an autoimmune disease that falls into the Lupus, Connective Tissue Disease but they said it didn't fall into the "typical" and so they would need to send her somewhere on the East Coast to have some very specific tests done to figure it out. We don't have those tests here.
Oh yeah, and what about the cognitive & memory issues that I have?