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    TC513 posted:
    Hello, my husband found this site while searching for an answer
    to my PLMT, while PLMT has not been diagnosed by a my Doctor. I have all the symptoms. I did show the case study publication from the Mayo Clinic to my family Doctor and she said it sounds spot on.
    I take 600mg of Lyrica daily, 60mg Cymbalta, Methocarbanol, Etodolac, hydro-condone and still all my Doctors have "written me off" there is no more they can do for me.
    I have had both hips replaced, my left knee replaced, a laminectomy and a spinal fusion. I live in Las Vegas and have even
    gone to UCLA and that Doctor gave me the "it could be
    Fibromyalgia" I am at a loss as to what to try next. One Neurologist
    saw my toes twitching and said out loud "I wonder what that is"
    I am nearly in constant pain and while the meds help a lot I don't want to spend the rest of my life living on these meds.
    thanks for letting me let off some steam and please keep us all posted
    if you hear of any advancement in treatment.
    I will do the same.
    kmaze001 responded:
    I have not heard of any advances, but I can certainly relate to the "I wonder what that is" comment. It's amazing how many neurologists have never seen this condition and apparently didn't even learn about it in school. Since my PLMT is relatively painless, except for aches in my foot and the rare stab of nerve pain, I was wondering if you could describe where you actually get the pain. And is it constant? Did your pain start at the same time as the toe movements? I'm coming up on two years with this blasted ailment and wondering if I will escape the pain.
    shelbylaynesmom replied to kmaze001's response:
    When my toes began to move it was funny,But after awhile wasn't anymore!They never hurt, tried to tape them up ..that was a big no ,no .I couldn't get the tape off fast enough.Here in the last 4months it has really brother me alot. Some pain ,moved over into my right foot.It took longer for the right side to move like my left. I feel pulling in my leg up past my kness on left side.My fingers are beginning to jerk, and shake .Im fine for sleeping ,,walking,,its just when i sit down.Anytime i sit not just at the end of the day.My balance is off,,i think now when my foot is pulling ,,it like a person is steching thier toes,,,i feel the back of my brain tightening also.
    TC513 replied to kmaze001's response:
    Hi K

    my symptoms began in late 2007 with lower back pain and my right leg/toes started getting numb. I had back surgery in May 2008. the Dr told me I would get the feeling back in my toes within 6months , if not by then it was not gonna happen. it didn't happen and has only gotten worse. I now officially have neuropathy in both feet and legs. the right is much worse. the pain is always with me. I try and explain it like this " imagine you were to wrap your legs in twinkle lights, and every time they twinkled it was a ache or pain. the pain can encompass my entire leg from hip joint to toes" sorry for the bad news. can I ask you if your Dr has diagnosed PLMT or just talked about it? I can't even find a Dr to talk about it. I've even emailed and called the office of a Dr Mhoon at Duke University, who wrote a paper on PLMT. he has not answered my email or called me. I am in Las Vegas and even told him I was willing to come to Durham, NC.
    May I ask you who your
    kmaze001 replied to TC513's response:
    Hi TC--

    My doctor is Jacob Sage in New Brunswick, NJ. He did, in fact, diagnose me. It took ten seconds. Then he said, "Well I guess I should examine you." He was very nice. I had all my test results and he didn't even look at them.

    I was in contact with Dr. Mhoon also, and he sent me a copy of his paper. I could send to you--not sure how to do a private email off this site. In fact, the article might be of interest to everyone here because it's a study of lots of patients over time. I guess I am very lucky because the little pain I have is manageable.

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