Well I'm glad that everyone has been so helpful! I had joined the National GBS/CIDP site and only about 3 people post on there and they are not near as helpful or nice as all of you have been. I know each of us are different but from looking at discussion and through friends I have made on here, I've learned a lot about CIDP. Some of the things I am gong through I didn't even know were symptoms of CIDP until I was told. I think the National site is a great site for getting some information so don't get me wrong but this site is so much better for learning personally and getting one on one advice like everyone has given me about the IVIG fusion.
I"m also curious how many people didn't test positive for the protein when they did their spinal tap? I guess I should do a new discussion and ask. I hear several people don't. Anyway I'm just glad to have this site and thank the people that are so supportive.
Just for the record, I am one of the folks who tested positive on the spinal tap. Prior to that, my doctor said he was 90% sure it was CIDP, but he wanted to do the test anyway. When it came back positive, he said he was 100% sure. Not a good outcome, but at least I knew what I was dealing with.
Bill
NEWONE said:
Well I'm glad that everyone has been so helpful! I had joined the National GBS/CIDP site and only about 3 people post on there and they are not near as helpful or nice as all of you have been. I know each of us are different but from looking at discussion and through friends I have made on here, I've learned a lot about CIDP. Some of the things I am gong through I didn't even know were symptoms of CIDP until I was told. I think the National site is a great site for getting some information so don't get me wrong but this site is so much better for learning personally and getting one on one advice like everyone has given me about the IVIG fusion.
I"m also curious how many people didn't test positive for the protein when they did their spinal tap? I guess I should do a new discussion and ask. I hear several people don't. Anyway I'm just glad to have this site and thank the people that are so supportive.
ThanksUncle Bill, I'm still waiting to have the spinal tap. Hopefully soon. The doctor that did my nerve conduction test specialized in auto immune diseases and he is the one that diagnosed me with the diseases. I have seen a neurosurgeon to rule out any spinal cord or other nerve related problems and had every blood test I think that can be done.
So if it didn't come back positive I just wondered where I would be at. I guess I should take one thing at a time.
HAVE CIDP FOR OVER 2 YEARS. STARTED IVIG 14 MONTHS AGO, BUT IT TOOK A BIT TO COME UP WITH A REGIMEN THAT DID NOT GIVE ME SIDE EFFECTS. STARTED WITH 5 DAY, BUT BY DAY 3 HAD FEVER, INC BP, LITE SENSITIVITY AND HEADACHE. TRIED THIS AGAIN - SAME. WENT TO 50MG FOR ONLY 1 DOSE - HEADACHE AND CHEST PROBLEM. WENT TO 40MG X 3 DAYS AND ADDED METHYLPREDNISOLONE (STEROID), BUT AS OTHERS HAVE EXPRESSED - OFF THE WALL. NOW - 30MG GAMMUNEX EVERY 2 WEEKS. MUCH LESS SIDE EFFECTS BUT SYMPTOMS REMAIN, BUT DON'T PROGRESS. ADDING LOW DOSE STERIOD (DOC WANTS IV STEROID, BUT WORKS WITH ME). THE POINT IS ONE DOSE DOES NOT FIT ALL. KEEP A RECORD OF YOUR DRUG, DOSE AND SIDE EFFECTS. CALL THE OFFICE AND IF POSSIBLE LEAVE A MESSAGE AND IF THAT DOESN'T WORK - SEND THEM A FAX. THE NUMBER IS USUALLY ON YOUR RECORDS. KEEP IN THE FIGHT FOR HEALTH AND YOU WILL BE A WINNER!
Paula said:
I have IVIG every 3weeks on gabapentin, being weaned off lyrica and baclofen. In conjunction with my IVIG I'm starting retuxan next week. I tried prednisone and developed insomnia! I would be stressed if I couldn't get in touch with my neurologist or his nurse, you can always see if you can get a different neuro?
btw...I get IVIG ever 3 weeks - diagnosed CIDP with nerve velocity tests/confirmed with spinal tap. Protein levels over 140 when tapped :( I get IVIG every 3 weeks but WANT it every 2 weeks. That 3rd week is always really hard to get thru, then it seems to take 3 or 4 days for the IVIG treatment to "kick in" and start making me more functional.
Does anyone go back to a normal life of getting to go on a vacation? I guess I could do without that if I can get out of the pain. I have talked with a few people and their pain isn't going away even with the IVIG treatment. It just seems to get them functional for awhile and I find this disheartening to hear. I certainly would like to get off some of my pain medications.
I scheduled a cruise to the Bahamas well before this disease struck and managed to work my infusions around it. In a wheelchair the whole time, but my brother and partner managed to walk me down the beach to sit in the warm azure blue waters. It can be done.
I take Gabapentin 1200 mg three times a day (9am/3pm/9pm) and Tramadol 50mg three times a day (6am/12pm/6pm) and find that my pain is well managed. Yes, I still have some pain and rely on the occasional ibuprofen, but I’m no longer crying all day and night. I can sleep now and it’s a miracle.