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I can't be the only one....

It has been 4 years that I have been searching for an answer for what is wrong with me. I have all over body pain, all joints hurt, I have lower back pain that radiates down my legs at times. I have arm pain that is constant in both arms. I have rapid weakness in both arms and hands. My physical therapist found that within seconds my grip strength reduced by 20% when she was checking my grip strength. Previously I tested positive for Myasthenia Gravis. I was tested again and the test was negative. I go to the VA and the neurologist was fine with a negative test and I have not seen him in over a year. I was found to be totally disabled at my social security disability hearing at the age of 33. So now I have Medicare and will be going to see my original Neurologist who found problems with my reflexes over four years ago. To me the sudden loss of strength should be indicative of some sort of problem. As well as the positive blood test for Myasthenia Gravis. I think it has to be in the family of MG. My physical therapist said that I need to find a Neuro-muscular specialist. Has anyone else experienced anything like this or know of someone who has. BTW the reason the neurologist had the blood work retested was because he said I didn't have a droopy eye like most do that have this. The test came back the second time on the high side but within limit so he said I didn't have it. Made zero sense to me. I hope when I see my Neurologist again for the first time in four years he will be able to point me in the right direction.


  • I have similar problems in my legs, but the cause is generally known. The spinal disease, while my physio told me that tendons are not well developed in legs which causes me to feel pain and grip strength in both legs is sometimes very reduced. I tested positive for Lesegue at 40 degrees in both legs and experience heavy tremor when test is done indicating that muscle, nerves and tendons of the leg are affected. I have chronic pain syndrome in LS region and for last few months I fell constant pain in both legs, except at the pool and in the warm water and in the bed where I put legs at the huge ball in order to put it at the right angle when pain generally ceases. You have to visit neurologist for sure, but also a good physio can order a treatment that may help. I use TENS on everyday basis to help me with pain in legs, take tramadol and sedatives to get muscles relaxed, but still the pain is there and making my life difficult.
    Scoliosis vertebrae THL
    Sy CC et CB
    Sy THS
    Sy LS chr
  • tweakerttweaker Posts: 1
    edited 03/15/2015 - 8:46 AM
    A Problem with doctors is you have to fit the exact model they learned on - Not 10% of patients that are outside this group, BUT worse is when there is multiple conditions to confuse a diagnosis. Unfortunately the legal aspect of malpractice insurance and a concern for business reputation.
    I read that many more people actually have lime disease than are diagnosed, since it may be at epidemic level which can hurt the ailing economy. Told by a doctor that the people who cry the loudest get more attention regardless of which insurance they have. I have gone down hill for over a decade with many of your symptoms and was told by last PC that it was all due to age. I was late 30s then and she was a decade younger. My Newer PC is younger yet has arthritis so did validate that symptom. But Remember Medicare was originally designed for aging people. And also in U.S. Laws were passed protecting doctors from a suit so they need NOT inform you of any treatments that are NOT covered by your insurance. I believe they must answer you honestly questions posed at them if you can acquire knowledge maybe via the web. But all this means that many things just go "Undiagnosed" tho with many, many, more (less expensive) trips to the doctor, unless you give up like the insurance companies hope.
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