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Mommyof1
03-07-2010, 02:25 PM
So this is my other post about the leg stuff. It started as one of my first real indicators that something wasn't right with me while I was on my way to a diagnosis. It started as a burning type pain and often accompanied by an ache in the tops of both thighs. Slowly over time it spread from my thighs into my lower back & stomach and then down my calves at times and then into my shoulders and arms and back of my neck.

When I got pregnant and all my symptoms went away all this did too. It just started coming back in my thighs/back. Before I was put on neurontin which I stopped along with a lot of other things because of the pregnancy. Not that it helped much before anyway lol I also had many tests done. 2 EMG/nerve studies which were normal, I saw/see a neuro at the same hopsital I see my rheumy who did the pin test and it showed patchy loss of sensation(the poke of the needle)similar to vasculitis. I have NEVER had any weakness associated with my symptoms.

The only other indicator of anything I have had is a slightly elevated CPK ranging from the 100s-300ish. I have been told this is not a high range.

With all that said I dont know what this even is or if anyone has had "peripheral neuropathy type symptoms" without weakness. If so, is there a name for this? Or can it be included within "Autonomic Nervous System Involvement" which I believe I have and have had many other symptoms of.

I would greatly appreciate any stories if you can relate or anyone that might have some information I can look into. Thanks so much. -Britt

magistramarla
03-07-2010, 04:33 PM
It sounds very familiar to me. I know that ache in the thighs very well, and mine is accompanied by weakness, too. I also have neuropathy in my lower legs and feet. Sometimes, I just can't feel my toes. I've had a lot of those tests and nerve studies, too and they all were normal. The neurologist was really funny. He struck a tuning fork, and then held it to my leg below the knee. He looked incredulous when I didn't feel a thing. I felt it mildly on my arms. Then he struck it again and held it to my forehead. I did a double-take! There is definitely something wrong that the tests aren't showing.
I've read that neuropathy is common in Sjogren's. I'm going to the Sjogren's Conference next month, so I'll ask about it and I'll report back.
Take good care of yourself and that baby.
Hugs,
Marla

Mommyof1
03-10-2010, 02:49 PM
I just wonder what it is thats going on...always so many possibilities but no answers...ehh.

mountaindreamer
03-12-2010, 11:31 AM
hi britt,

i too deal with this pain in my thighs.....i described it to my drs. as feeling like a heavy bar was laying accross my thighs - both of them at the same place.

i have yet to find a dr. who has a clue what it is....I was diagnosed with interstitial cystitis in 1996 (bladder is eaten raw by something)...and in the list of symptoms, i found this intense pressure pain in the thighs, so i have always associated the pain to the IC. i have never taken any medication for it, but i did notice a decrease in the intensity after i had the flushing procedure done on my bladder....hmmm.

Marla,,,,can't wait to hear what you learn at the conference.

widebody
03-12-2010, 12:32 PM
I, too, have constant pain in my hip joints, right at the top of the thigh. Kind of a steady, dull ache that occasionally flares into sharper pain. My rheumatologist ascribes it to a type of arthritis that affects the sites where tissues connect to the bone. All related to the whatever-i-have buffet of autoimmune delights. I haven't found anything that takes it away except the lupus going into remission. Drugs help, but just take the edge off.