Bill

Your Replies

  • Bill
    November 14, 2006 at 12:19 pm

    For what it is worth: I attended the GBS/CIDP symposium in Phoenix 10 days ago. The question was asked of the medical panel (leading neurologists who specialize in GBS/CIDP) about taking the flu shot. The panel agreed unanimously that GBS/CIDP folk should take the shot. They said that any vacination using dead virus, germs whatever was ok for us.

    I have had CIDP 13 years and have taken the flu shot each year of this period and each of my 3 neurologists during this time period have said “You already have it and a flare up won’t kill you. Flu might well kill you. Get the shot.”

    Bill
    October 17, 2006 at 6:18 pm

    Aimee,

    I do not know what kind of staph it was but I will check and see if I can find out. If I get a name I will post it here.

    Bill
    October 15, 2006 at 1:14 pm

    Aimee,

    My experience. I was dx CIDP in 93-94. Treated with IVIG and Plasma exchange and good response. Basically symptom free. In May of this year I had chills at noon on Friday. Felt punk on Saturday and by Saturday night could not stand or even crawl. Sunday night difficulty breathing and was placed on ventilator. I spent 3 weeks in ICU with ventilator and 5 more weeks in hospital and rehab. Can just now walk without a cane. Came home from hospital in wheel chair, after two weeks moved up to walker, then to cane and now walk without cane but with poor balance and little endurance. The diagnosis was: Staph infection which exacerbated the CIDP. The staph moved fast and I was basically paralysed within 36 hours. My experience says staph can put CIDP into high gear.

    Bill
    October 14, 2006 at 11:18 am

    Hi John,

    I have no idea how many or if there are more than two or three. I was dx CIDP in 93 and Meneir’s in 96. Happy to report that Meneir’s seems to have “burned out” so far as vertigo. None for 12 months. Lost all hearing in one ear but can use other ear and with no vertigo feel much better. I have no idea if it is connected to CIDP. ENT doc also wonders but we don’t know. Seems to me that both are neuro problems so there could well be a connection,

    Bill
    August 30, 2006 at 11:42 am

    After 5 years of “hide and go seek” with veins every three weeks I finally went to a port. It was a “Bard” port and a simple proceedure placed it in my subclavian (?) vein on the left side. A slit was made in the skin and then the catheter went into the vein. The top of the port with a diaphram was sutured to the muscle and then the flap was closed and sutured over all. Nothing showed but a small scar line and a small “bump”. the port was accessed with a special needle and then away we went. Actually used it right after it was put in place. It was also used for access when I was hospitalized with a deep vein thrombosis.

    No more misses, lost sites etc. I loved it. The nurses who accessed it wore sterile masks, sterlized the site, were very careful to keep gloves sterile and the once needle in place and tested the site was covered to keep sterile. When vinished all was removed and a “band-aid” covered the site.

    Bill
    July 24, 2006 at 7:26 pm

    For IVIG I had an infusion port placed beneath the skin on my left chest. Worked really well with little or no risk of infection. When I had to quit IVIG I had an “Ash split catheter” in my right side jugular. Worked well for PP but it was the point of invasion for a staph infection which in less than 72 hours so fired up my cidp that I was in the ICU on a ventelator in critical condition. Now after 8 weeks in the hospital this hiking climbing guy of 2 months ago is home and riding in a wheel chair. For PP the folk here recommend a fistula which gives good access and little chance of infection.

    If you are going PP have a surgeon build you a fistula. Use a quenten (sp?) catheter which is pulled after each set of PP until the fistula matures.

    Bill
    May 19, 2006 at 4:57 pm

    I did 34 grams every 21 days for 10 years. NO PROBLEMS
    This held me in “remission” for the entire 21 days. If I stretched it out it was like I fell off a cliff. Wham, I could barely walk. No IVIG now as I had a bad reaction and doc will not prescribe it any more. After being surrounded by 3 docs, lots of nurses, plenty of needles and oxygen, I guess I’ll go with the doc. He says next time may kill me. Any way, I would find a cycle that kept me basically “symptom free” and run with it. Here’s to IVIG it is the best.

    Bill
    May 19, 2006 at 9:48 am

    Great article. Many and much thanks.:D

    Bill
    May 6, 2006 at 5:01 pm

    Oh! I am glad to be back! I really enjoyed the UK forum but, this one has info on US docs, hospitals etc.
    Sorry all our profiles, back information, etc. was lost but so happy to be “home”.

    Bill
    May 6, 2006 at 4:59 pm

    Mike, it has been 12 years but I don’t remember a shot or anything nor do I remember any pain either time (2 times in a row as the first time he missed.) but did lie flat for an hour. No headache etc. Good luck!:) 🙂

1 2 3 … 7 8 9