they did an emg test at the first dr i went to he pumped me full ivig treatments 5 the 1st month then put me on prednisone after the 1st pill sugar went to 500 my dr tried to talk to him but he wouldnt talk to her said it was ok. she sent me to another he went by what the first dr said never did any tests at all he cut it back to 3 times a month wanted me on 60 mg prednisone a day. went to the encronoligest they put me on 2 types of insulin plus oral meds they still couldnt keep it under 300-350 i couldnt eat anything when the pill wore off everyday my sugar would drop like a rock 40-60 so i was either up or down takes its toll on you. i felt great the first week i was on prednisone had so much energybut as my immune system went down i was feeling worse and worse all the good side effects were kicking in . after 3 months of 3 day ivig he kept telling me i was doing better and better i knew i was not i hurt so bad i didnt walk anymore then i needed to then he cut back to 2 days of the ivig and put me on 1000mg of cell cept besides the prednisone my body couldnt take it one day i started falling several times a day called the dr thought i had a stroke or something he took 2 days to call me back i ended up in the er the dr told me there my body was shutting down and told me to get off the prednisone so i did started weaning off it. I made an appointment with another dr the first time he referred me to the best dr in the field he didnt tell me but he thought i had als. after waiting 3 months to get in he did a blood test takes about 3 weeks for the results but i tested positive for the mutating gene also found out some people in my family have it i did not know they were my moms cousins that i did not know. the prednisone made my cmt go into over drive from the elevated sugar levels. some symptoms i had years before the numbness were i couldnt lay on my back couldnt breathe the drs told me it was astma ha ha but i have back curvature like scoliosis . i went through all kinds of tests the lung dr told me it was sleep apnea another haha . i dont have luck with drs. If you suspect that you might have cmt have them do a blood test. from what i have seen and read i think i would rather have cidp some times treatments help and you allways have a chance of gettingt better Its rough hearing from your dr there is nothing he can do for you and there are no treatments your going to have to learn to live with it and he wants me to join the mda. i am not ready to do that im not giving up this is not a termenel disease and slow progressing al tho i can get around the house ok without a walker ive lost 40 lbs and im going to keep going . My hands are not worth a darn anymore cant open a ziplock bag or put a plate in the dishwasher because i have no streangth in my thumbs but im learning my limits on what i can do. the muscle cramps in my ankle and foot are enough to make you cry but take a pain pill and muscle relaxer and it goes away. My attitude is getting better everyday after almost 5 months off prednisone now i am starting to feel like my old self again guess the side effects are starting to wear off i also started sweating again
[FONT=”Microsoft Sans Serif”]i am very interested in hearing about your experience with savella. it was prescribed to me, the starter pack, but i never took it. i have been holding off before starting yet a new drug, especially since i am off all cidp meds. as i continue to heal from the nerve damage already done when my cidp was active, i still have some pain– i’ve been keeping my eye on savella.
best of luck with it– hope it keeps on working.