Thanks for the Replies

March 7, 2011 at 10:21 pm

I appreciate all of the replies to my thread. It gives me reassurance in dealing with CIDP. I thought about Myasthenia Gravis because one of the first symptoms is eyelid problems. But the Neuro is confident about the diagnosis of CIDP after all of tests and pathology report. I forgot to mention that the neuro-opthamologist suggested I have eyelid surgery to help with the drooping eyelids. It is not considered cosmetic surgery because the droopy lids are interfering with the visual field of each eye. I realize that it might not help as far as neurological involvement but maybe I will not look like the cartoon character—Droopy the Dog. It pays to keep a good sense of humor with this condition.

thanks for the replies

January 1, 2011 at 6:37 pm

Already adept at using transfer boards(donated mine to the nursing home i am going back to plus a hoyer lift) Went thru physical therapy to get ready for surgery and the rehab is ready to keep me fit. Only less than a week to go. Still not sure what to do about IVIG. Maybe take a hiatus. then restart when i get released from the home. I guess i am as ready as possible. I am supposed to get a private room this time. I hope that is true. I know the first couple of days will be very hard. Pain Management will be difficult. It will take a while to get acclumated to the staff schedule for meds. I am so worried about the pain. I hope i can get my pain meds when i call for them. I am not taking any now and should be because this hurts all the time now. Drs are really going to pay attention to my bladder issues as well. I will probably need a bedside commode. I have my own and will take it with me. Getting staff to take me to the bathroom will be slow i am sure and my bladder cant exactly wait very long. Will keep you updated .

THanks for the replies

September 19, 2009 at 8:26 pm

I really appreciate yall taking the time to reply. I am sitting here tonigght after a long day with my mom and her friend. they insisted I go to the flea market with them. It was indorrs and i took my cruthces. Boy am I tired and tingling. we were there for two hours walking around (after an hour i sat down for a bit on a wooden bench someone was selling) I am also having trouble again with my bladder. SOmething is definitely up with my body. If i am still feeling wierd on monday i will call the neurologist. THe pain in my side is still there maybe it is all tied together. At this point i dont know i just want to feel better and get my strength back. I ahve to work tomorrow for a few hours I hope I get some rest tonight. thanks for listening Amy

Thanks for the replies

August 22, 2008 at 7:07 pm

just got released from the hospital. had lumbar puncture – negative for the virus had other tests fone as well. seems that it was a flair up hands still numb (from the chin down to my feet actually) follow up appts in the next severl days. seems the stomach virus i had last week may have brght the symptoms back. getting frustrated finally making progress and now they say damage may be permanent. mentally more of a toll then physically. dont know what to do. this is getting harder instead of easier.