• Anonymous
      January 30, 2009 at 5:31 pm

      I am new here certainly not in age-84. I have had CIDP for 8 years. I have used the computer and some doctors to read clinical studies. I have found that the younger one is the better ivig treatment works to some degree. It is difficult to find many studies with many patients with CIDP. The few I found show that young women respond better than young men, especially in their twenties. This gender difference seems to mitigate in the thirties. I also found that after forty-ivig does a little good and by the sixties, there seems to be no evidence of any positive help. Is this valid?

    • Anonymous
      January 30, 2009 at 8:26 pm

      Hi PWBOOKS,

      I just saw a post from Wing on how long IVIG stays effective. I wish we could get some good answers there. I don’t remember anyone at the syposium asking what you have asked, although I wish someone did.

      I just started the IVIG and I turn 45 in two weeks. My first dose was like a miracle with major improvements. I believe the amount of improvement suprised several doctors and my home nurse. I am hopeful to get on a roll here and knock this disease on its Butt!

      I went from using a cane doing steps on my behind, to fast walking and short sprint jog and knumbness reduce by 1/2 at least, I can now carry a 40 lb bag of wood pellets with one hand and about hold it out in front of me. Almost Hulk like. all that in 4 weeks.
      It would be discouraging to learn that its only temporary or won’t work in a few years. But if thats the case hopefully something else will come down the line. See Ya–tim–

    • January 31, 2009 at 12:05 pm

      I am approaching 80 years. Diagnosed CIDP 15 years ago. Have done IVIG every 3 to 4 weeks since then. Just came in from a 2 mile walk in 30 minutes at elevation of 7600. IVIG has been consistent in its work for me. If I try to skip a session I wind up unable to walk in short order. For me, age has nothing to do with the effectiveness of IVIG. I am acutely aware of how lucky I am.

    • Anonymous
      January 31, 2009 at 2:38 pm

      Hi Bill,

      Wow, that is great! I am glad to know both you are helped by it and also that your age responds well. thanks for sharing that.–tim–


    • Anonymous
      January 30, 2009 at 5:21 pm

      I am 84 and have had cidp for eight years I have found ivig seems to have positive results with people in their 20’s to 40’s. After that it seems to be diminish to no positive outcomes by the time one reaches sixty. Have others found this?


    • April 20, 2008 at 2:26 pm

      Has anyone else noticed a pattern in their residuals/bad days? Like a monthly or weekly or other type pattern?

      If anyone has any info on this I would appreciate the input. Why would residuals seem to flare up on a cycle? No MS was found in any test done, everything else followed GBS symptoms and such. Nothing else unusual was found either.

      Thanks, just looking to add to my mental book of knowledge.


    • Anonymous
      April 23, 2008 at 1:14 am

      Well, sorta! When I over do, I pay 😮 And, I am definitely affected by the weather.

    • Anonymous
      April 24, 2008 at 10:33 am

      Of course when I over do it or am stressed, but I notice a remarkable increase right before and half way through m menstrual cycle. Hormones?
      Thanks for posting

    • Anonymous
      April 24, 2008 at 11:11 am


    • April 24, 2008 at 1:41 pm

      About the menstrual pattern…you are completely right. I have that as well. My residuals kick in right before I start. I thought I was imagining things so I contacted Dr. Parry about it. He confirmed that menstrual cycles can indeed cause flare ups.

      What I have also been experiencing is a flare up of resids right about the same time it got bad enough to send me to the hospital. the 21st of each month. I havent noticed if it is every month…since my menstrual cycle had been around that same time so I only noticed it if my period was early (since being a few days late the resids would be acting up anyhow). This month I was miserable for about 3 weeks straight…still a bit wonky but not even nearly as bad (was so bad a few days ago that I honestly thought of going to the hospital). It started getting better yesterday and was at its worst on the 21st. I was concerned about CIDP but my original episode came on rather quickly as per GBS pattern of progression. I am usually not miserable for so long, a couple of days or so and i am fine, but the past month has been rough. Legs and feet going crazy, a bit of weakness (a feeling of weakness instead of actual because I can lift things, stand on my toes, pick up things with my toes, walk up and down stairs that sort of thing). Of course that all causes anxiety attacks which have bugged the holy tar out of me. I went to a dr and found out I have sinus problems and have had them for about 3 months now. Got some antibiotics and am feeling better but I am sure being sick and not actually knowing it added to stress on my body. I got a referral to another dr who is taking new patients and will be talking to her about residuals and the anxiety. I am thinking about Cymbalta or something, but need more info from y’all.

      Anyhow, this is getting pretty long so I better let ya go. I know overdoing things will cause problems and I had shampooed the carpet in the entire house right before I started feeling crummy. The house looked great but I felt awful LOL! *sigh*

    • Anonymous
      April 24, 2008 at 6:23 pm

      Hey Lori ~ just “maybe” the toxins from the carpet cleaning put an over-load on your system! In spite of my being as “green” as possible I reacted to the pesticides, herbicides, and fertilizers being used in abundance at this time of year 🙁 My acupuncturist/kinesiologist picked up on this when I presented with a horrible migraine and much more leg/arm pain than the usual. Remember, the first thing toxins “head for” is the nervous system 😮 I wish you well.


    • Anonymous
      March 17, 2008 at 5:51 pm

      [FONT=Comic Sans MS][SIZE=4][COLOR=Navy]I’m just curious. Does anyone else who is taking chemo get side effects on the day of and the day after even after several months of taking it? I still get nauseaus, extream exhaustion and my bones ache as if I have the flu. I take my dose once a week and lose two days of the week due to this. I’m wondering if this is common. I ache so much today! I tried taking the dose last night instead of in the morning to see if sleeping through the night would lessen the effects but it seems to only make it worse. Any input would be helpful.
      Top o’ the evenin to ya