Bill
Your Replies
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October 29, 2014 at 1:51 pm
Been there, done that, no fun! Are you still doing IVIG?
July 7, 2014 at 7:08 pmI would appreciate somebody posting how they know their cidp was caused by the flu shot. Thanks
June 16, 2014 at 12:33 amHow do you know the flu vaccine caused your CIDP? The foundation has found little or no evidence for flu vaccine as a cause of CIDP. The bi-annual symposium has had lengthy snd detailed expert presentations commending the vaccine. I am sorry you have this nasty stuff. After over 20 years wi th it to include 4 weeks on a ventilator I think I know how you feel and I wish for you the “success” the treatments have brought to me. Hang tight!
January 21, 2014 at 11:07 pmThanks much,
Since I posted I stumbled across a report that stated the recommendation that GBS folk not get the vaccination was lifted in 2010 based on an exam of 2,000,000 recipients. I guess I will get it. Thanks a lot I really appreciate your replies.
December 24, 2013 at 7:54 pmI started with PE, 5 times in 5 days followed by 3 days of IVIG, as the Neurologist said prednisone was really a problem with its side effects. Did really well for 10 weeks then regressed sharply and back to PE 5 did well for 3 weeks then “off the cliff”. Then we did IVIG 5 loads and moved to every 8 weeks, then 6 weeks then 4 weeks then 3 weeks and I did really well on the IVIG basically symptom free. Now after 19 years we are trying me to see how long I can go without treatment. For me both IVIG and PE worked wonderfully well but IVIG is much less invasive and 1 day per period is lots better for me than 5 days of PE per period.
I wish you well with whatever treatment is decided upon.
December 6, 2013 at 8:08 pmYes I have an “early warning”. Mine is “pins and needles” in finger tips which if disregarded spreads up my hands and then is accompanied by leg weakness. After 19 years I have learned to heed the tingling and get IVIG or else slide down the slope to needing help to walk.
November 4, 2013 at 4:14 pmWow! Thanks Drew. Great job and great info.
October 18, 2013 at 10:04 pmBob I could have written yoour post. You described me and my experience. Getting a port saved much time and a multitude of sticks. I wish I still had it. The record for me at one time is 10 sticks. I strongly recommend a port.
October 17, 2013 at 3:56 pmThanks Mom. Good to see you back on the forum.
October 14, 2013 at 4:54 pmFor what it is worth. I did IVIG at 4 week interval and did a 5 day load every 18 months for years. The load would get me back to where I was normally on the 4 week. I now have progressed to a 18 week interval but then had a big relapse and once again a week ago did a load. I am now 80% of where I was and headed up. My Neuro wants me on an interval where I am symptom free and this means I may have to do a load once in a while. Been doing this for 19 years.
October 7, 2013 at 9:23 pmThat’s me. Fine work, especially if I am tired, is maddening.
September 24, 2013 at 4:29 pmI did PE 5 days in a row every 4 weeks for several years. Did ivig every 3 weeks for years. last two years stretched out to 5 then 6 weeks and now it has been 19 weeks. All this over 19 years. The point is that for many of us a 3 – 4 week spacing is not unusual to stay symptom free and that you never know exactly what lies ahead. I never imagined 19 weeks and still going strong. Hang tight.
September 20, 2013 at 10:22 pmHang tight. I know how you feel. I am trying to go with nothing after 19 years of treatment.
September 16, 2013 at 6:06 pmHey, you got the wish. Good luck and hang tight.
September 3, 2013 at 7:58 pmHi
I have had a real reaction to the clear wound covering. I discovered I am alergic to that and regular tape. The nurses at the dialysis center in the hospital used silk or paper tape.
I always had 5 days in a row but was fortunate that medicare and tricare paid for it. I had good results and did PE for several years everey 4 weeks – 5 days.
Good luck and do well
