finally got an answer

    • Anonymous
      July 29, 2010 at 11:52 pm

      first thanks to everyone for the good advice they have given me. i was diagnosed over a year ago with cidp was treated with hi doses of prednisone and ivig treatments. ended up in the hospital last Dec with blood clots in my legs from the ivig treatments. i kept telling the dr i was not getting better and i could not keep my sugar under control even on all kinds of insulin i couldnt keep my sugar under 300 i wasnt eating if i ate anything my sugar would rise and couldnt get it to come down. then when it did when the pills wore off it would drop to between 40 and 50. I tried so hard to keep it under control 60mg prednisone i should of gained alout of weight but lost 40 lbs in a 6 month period. i tried and tried to get him to take me off the prednisone its like he just didnt care my legs after the blood clots formed got so big the started leaking water that is what put me in the hospital they got infected. my walking and hand use kept getting worse. in january after the blood clots i was put on cumadin . in march all of a sudden i started falling messed up my knee and had bulged discs in my back from it. i called my neuroligest because the pain was so bad and i was worried that i had a stroke or something after i fell he wouldnt return my call a month earlier he added mycophenolate (cellcept) 500mg 2x a day on top of the prednisone. after falling several times in 1 day i can no longer walk without holding on to something . the er dr advised me to get off the prednisone and told me how to wein off it. The dr finally called me back 3 days after the er visit asked me if i wanted to come in. i allready contacted a different neuroligest. went to see him he sent me to the best specialist in the feild in my area took 3 months to get into see him. in may i ended up back in the hospital legs infected again. my legs were leaking so bad i was using kotex over the leaking spots they were leaking about a quart a day. as soon as i got under 10 mg a day on the prednisone it was like shutting the faucet off legs stopped leaking. was off prednisone by the middle of may feel much better now .Went to the new neuro june 29 spent 6 hrs in his office doing emg breathing tests and blood tests the dr that referred me thought i had als thank god i didnt he took a blood test took 3 weeks to get the results but it confirmed what he thought i do not have cidp but i have Charcot-Marie-Tooth disease. wich there are no treatments for i asked him what caused it to get so bad so quickly he told me it was from the elevated sugar levels triggering it. i only wish that other dr would have done some tests rather then just putting me thru all the hell i went thru in the last year. its never going to get any better i guess its a good thing i filled out all my ssi disability papers. i hate to do it but i am going to contact an attorney because of the actions of that dr my life will never be the same but after i have surgery in a week or so on my foot im gonna push it hard and do my best to try to build up the muscles in my legs and hands so adleast i can get around somewhat Dave

    • Anonymous
      August 1, 2010 at 5:31 am


      CMT is frequently one of the last remaining choices in the diagnostic path that CIDP is on as well. Both diseases present the same symptoms and very similar actions, the pains are similar and actually the treatments for the pain is similar. There is no cure for Charcot Marie Toothe, but there is no cure for CIDP either,

      I was initially misdiagnosed with CMT first and then CIDP later. I learned about both. I have met many fine people along the way. I always find that if you look for the silver linings you don’t get nearly as much rain.

      Take care

      Dick S

    • Anonymous
      August 1, 2010 at 8:24 am

      Dave, you’ve been on quite the ride and not a good one. I pray your upcoming surgery goes well and that you’ll receive a diagnosis and treatment.

      Hold on, take care and stay strong.