Would like to talk to people with this syndrome, what kind of treatment program or therapy you had that helped. Been seeing pain management doctor. No physical therapy. Take different meds, use heat & ice. Tens unit does not help. Would like some recommendations on what else to try.

Yeah i have been in this since late 04 and mine progressed to paralysis although some function and motor skills have returned i am still considered a high function Quadriplegic as i have loss of nerve function in all extremities, i also suffered through lots of pain until Doctors finally put me on opiates, now i'm doing much better, there is no "over" this its getting through this with your sanity intact it is a genetic mutation that will be passed to any off spring and with each generation the mutation will become more severely affected offspring. Or i should say that is if you have HNA,because i have HNA and Muscular Dystrophy i have been told that there is a 1 in 9 billion chance of another person having these two diseases, and with me they appeared together at the same time and it took a lot of Neurologists telling me i had ALS before i found one who was able to see that not all of the symptoms could be attributed to one disease and started figuring things out and doing genetic tests until he got his answers.

I woke up one night 3 years ago with severe pain in my right arm. Thinking I has just slept wrong I went to the couch to watch TV and wait for some Tylenol to kick in. Within an hour the pain was so bad I had to wake up my husband and rush to the ER. While there the pain shot across to my left arm. The doctors had no idea what was wrong with me, but sent me home anyhow. It took 2 weeks for me to get in to see a neurologist. My neurologist is my hero, within 10 minutes of talking to me, he knew what was wrong. He explained the disease and sent me off to the hospital for 5 days of outpatient IV steroid treatments, he also put me on gabapentin, gave me some other pain meds and sent me to physical therapy. PT helped and they sent me home with a tens unit (small unit that delivers electro shocks) So now here I am 3 years later, still in pain and still with weak arms. I take Neurotin which helps a little and I still use my tens unit all the time. In the beginning I was hopeful, after reading that 75% make a full recovery. Now I am starting to believe that I am going to be one of the 25%. I guess there are options to administer medication through injection that will block the nerves and there is surgery. Both of these options sound so very dangerous to me. Anybody here been in this longer than me?

I know you are posturing your arm for comfort and relief i did the same thing for awhile and then when it was paralyzed it was always in my way banging into things so i carried it in a splint,problem is now i have a permanently bent elbow, for love nor money can i get this thing to go all the way straight so you must resist that urge to fist it across your chest otherwise you will pay for it later in loss of mobility.

So I have this pain in my right four arm.. I cant extend my arm straight. If & when I do I have a shooting pain like an electric shock run down my arm.. My hand by my thumb and pointer finger go numb and tingles.. If the pain starts i have to put pressure on my fore arm by the elbow crease or just under it! My arm feels better in an up position fisted to my chest! Please let me know what types of pains you are having?

I was a Paramedic/Firefighter until 10 years ago when at the same time i developed Muscular Dystrophy And PTS and Doctor after Doctor Diagnosed me as having Lou Gehrig's Disease (ALS) and telling me i would be dead within three years, Until i ran across a Neurologist who said i don't think we are looking at one disease not everything fits right,I think we have two diseases appearing at the same bad time and he sure was right!! and i have have gone through periods of paralysis the longest being my right arm and hand which lasted 5 years and currently it's playing ping pong in my legs but i lost my ability to walk 6 years ago and with my arms being the way they are i have had a power wheelchair for along time so it can play its little games anyway nice to see people here.