Bill
Your Replies
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August 12, 2011 at 1:56 pm
Hi,
I had some breathing problems but not like yours several years ago but I remember it only as shortness of breath. I think my diaphram muscle was affected and I just was having a slight difficulty breathing.
You might have a diverticulum in your throat. I had one and it made swallowing difficult. An ENT doc can check that out.
The wasp thing sounds like you may be having a reaction and need to see a doc asap.
Good luck.
June 9, 2011 at 3:46 pmHi,
Yes, I am fortunate to have a supplement that covers the 20%. I figure that in the 17 years I have had IVIG 175 times and plasma exchange 180 times.
June 8, 2011 at 10:19 amI have been on Medicare for 17 years and it has covered (80%) my for 17 years. I have to go to the hospital infusion center but for me not a big deal. I would not want it at home as I had a anaphylactic reaction once and am glad I was at the hospital and not at home.
March 2, 2011 at 6:55 pmThanks for all the good advice. I actually followed it! Drank enough water to fill a bath tub and did blood again and the creatinine dropped from 1.8 to 1.4. So I did IVIG today.
Thank you very much.
March 1, 2011 at 1:33 pmMany thanks for the advice. I have checked my other meds and they are OK. I will load up on water and get a new blood test this p.m. I live in a dry climate and know -but knowing isn’t doing – that I really should keep well hydrated.
Again, thanks to both of you for the really good advice.
February 14, 2011 at 11:53 amMy first treatment for CIDP was PP. It really worked well. Only problem was access. After PP (5x each session) twice and thus in hosp 6 days each we switched to IVIG. 10 years latter we switched (big reaction) back to PP and again it worked well for 4 years (now back on IVIG) with some access problems but all in all – other than the 5 times a month at hospital – it worked well for me.
February 9, 2011 at 3:51 pmno to all but 5. combat in Korea
January 15, 2011 at 1:19 pmGo! Push the envelope! Neuropathy stinks but life is good.
Those of us with CIDP and who have attained the status of “senior citizens” are never sure how much of our loss of activity is due to neuropathy or the aging process. I tell my neuro that I am not sure which is causing which as I have never had CIDP before and I have never grown old before.Hang tight!
Bill
January 15, 2011 at 11:07 amHi Jessica,
Sorry to hear about all of your medical problems. I hope that you and your physicians bring you to better health.
As one who has no idea of what caused his CIDP I wonder if you would take the time to tell me how you and your physicians determined that the flu shot caused your physical problems.
Bill
January 13, 2011 at 11:42 amKimberly,
I could be wrong. For me that would not be unusual. At the symposium in Nov. there was a 1 hour presentation on the flu shot. As I remember it the presenters said there was no reliable evidence of the flu shot causing GB. There was an uptick in one year in the 80’s where a bad batch of the shot was blamed for GB but since then there has been little or no evidence. To a person all of the GB/CIDP experts at the symposium said “get the flu shot”.
Having said all these I will admit that might memory might be faulty. Maybe someone out there took better notes than I did and can respond.
I think the foundation website has a recording of that 1 hour and you might want to look it up.
Bill
January 12, 2011 at 5:05 pmHave been treated monthly for CIDP 16 & 1/2 years. Have had the flu shot every year. NOTE. At the Symposium in November the neurologists all said “get the flu shot”. In essence, there is little or no evidence of GBS or CIDP caused by the flu shot. Flue will kill you.
October 15, 2010 at 10:54 amHi Lori,
I have been on IVIG/PE for 16 years. Did PE for 6 months then shifted to IVIG for 8 years then back to PE for 3 years and now back on IVIG.
I cannot tell any difference in result. However, IVIG is much simpler, less invasive and takes one-fifth of the time. Also, if you have small veins then you will have to have a catheter for each time on PE and/or a fistula.
I hope this helps you decide. Good luck and good health.
September 13, 2010 at 1:09 pmHey Swidy,
I am with you. Same age and same time on old and new and same remembrance and sense of Lee. If you reach the end of the rope tie a knot and hang tight.
September 3, 2010 at 8:09 pmAh, Yes. Many years ago we soldiers called it “The Order of the Green bannana”. 😀 😀
August 12, 2010 at 1:20 pmChelle,
I had a big reaction to IVIG 5 years ago. My neuro would not let me have IVIG anymore BUT after I did research though this foundation and at the semi annual seminars I got the info for my neuro that said “lower the rate to 50 ml per hour and go to a surcrose free immuno globulin” I am now back on IVIG, using Gammunex and running at 50 ML per hour and really doing great. I am once again basically symptom free.
