Bill
Your Replies
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August 7, 2010 at 5:00 pm
US Army Guard 1946 – 1989 combat infantry Korea 51-52.
June 14, 2010 at 10:31 amMy first symptoms appeared in 1987 and slowly developed. Diagnosed as Carpal Tunnel. Kept progressing until weakness discovered in 93. Diagnosed in 94 and treated ever since.
I have thought, and thought and thought and keep sliding away from the trap of “after this therefore because of this”. I do not “know” what caused the CIDP and neither do any of my doctors. I guess it was just the luck of the draw. As to what I would say if I was forced to guess would be campylobacter jejuni with some long forgotten stomach “upset”. But that is purely a wild guess.
June 10, 2010 at 6:59 pmI have had PP for about 3 years (180 times) and results good. However. I had two different fistulas, one in each arm, and an AV graft and all ultimately clogged off. Finally back to IVIG for the past 2 years. The difference for me: No more fistulas or lines, 1 day per month in local hospital instead of 5 days per month in hospital 45 miles away and I think I have slightly more strength.
PP was good but for convenience I will go with IVIG every time.
PP may be more effective for GBS but I have CIDP and IVIG is at least as effective for me, more convenient (5 minute drive compared to 1 hour 20 minutes one way up and down the mountain) and a lot less time.
May 21, 2010 at 12:36 pmYou never know. I have had CIDP for 17 years with regular treatment. I also have had several root canals, crowns, filings etc. and all with shots whatever to deaden mouth and no problems. I think they use lidocain. I had lidocain several times when doing plasmaphersis and no problem. I have had four neurologists – all good – and none ever mentioned any problems with any kind of anesthetic. Also had 8 surgeries with complete anesthesia to put me to sleep and no problems. Maybe I am just lucky. Who knows?
May 17, 2010 at 5:30 pm1. I get to blame it on CIDP instead of admitting I am just too old.
2. I get to meet a lot of doctors and a really great bunch of nurses.May 6, 2010 at 2:55 pmWow. Not fun.
I have had the same experience. Here is what we have done and it is working well: Switched to a immune globulin that contains no dextrose/sugar, Gammunex and slowed way down on infusion rate to 50 ml per hour and added the pre med by IV.
It is all working well.
April 13, 2010 at 11:08 amHi Clare,
Welcome to Colorado.
I was diagnosed in Colorado in 1994, treated in Colorado (just had IVIG yesterday) and live at 7600 feet. I have not noticed any difference in my CIDP either here at home or several weeks at sea level. DO TAKE ELMO’S ADVICE SERIOUSLY.
Have a great visit and do come up to the mountains.
March 22, 2010 at 5:11 pmI had big time reaction after 10 yrs ivig. We now premedicate with 100 mg of hydrocortizone and slow down the infusion of gammunex to a max of 50 ml per hour.
No sides at all.
March 16, 2010 at 2:04 pmI have been “doing” IVIG for 16 years 32 grams every 4 weeks. If I try to go without it I also “fall off the cliff” and can barely walk, etc. My 4 week interval keeps me basically symptom free. My Neuro does not think I am too old for this treatment. Oh, yes, I am 80 years old.
March 9, 2010 at 6:42 pmCount me in. Could be very interesting.
March 7, 2010 at 4:12 pmElmo,
My onset of CIDP was long and slow with no paralyzes. However, after12 years of very successful treatment I suffered a rapid (36 hours) reversal brought on by an infection that resulted in paralyzes of legs, arms, breathing, you name it. Spent 3 weeks on ventilator and took 4-5 months before out of wheel chair and walking on my own.
Soooo, I think that for GBS paralysis is part of diagnosis but not a part of diagnosis for CIDP. BUT, I can testify that you can be paralyzed with CICP.
I hope you get a diagnosis and good treatment soon. took me 10 months to get the diagnosis and treatment. (I am doing really great now, symptom free)
Bill
February 25, 2010 at 12:39 pmBeing “the praying sort” I second all above.
February 6, 2010 at 3:27 pmI hear you Pam and Elmo.
I simply do not want me or anyone else touting a specific product on this board. It is one thing to say “I took such and such a treatment and had this result.” To me it is totally different to say “I took XX which I purchased from ABC and It helped me.” My only purpose in this thread is to say that MAYBE I was helped by a product as others have told us they were helped by this that or the other. Looking back I rather think I should have kept my mouth shut.
If I could claim I had proof that the product was the cause of my new energy I would consider naming it and direct you to it.I will be willing to give names to anyone who emails me.
February 5, 2010 at 5:58 pmAbout 16 years BUT the big thing is they changed them about 6 months ago with some stuff which they have patented and they claimed greatly increased the ability of the body to absorb the vitamins and minerals. I did not know of the change until two days ago. I had just improved and didn’t know why. I AM NOT CLAIMING THEIR STUFF DID IT. But, I can’t think of anything else? Who knows?
January 28, 2010 at 1:53 pmYes, I do. I don’t think they have anything to do with CIDP but I don’t really know. My primary care eye doc who is my son-in-law and knows some about CIDP is not concerned about the migraines. So, I am not concerned either.
