Bill
Your Replies
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June 16, 2009 at 6:40 pm
The first 4 years I had IVIG it was without a pump. We counted drips.
I think I still remember 11 years later. 10 drops 30 ml ph, 20 drops 60 ml and finally leveled off at 40 drops for 120 ml per hour.May 25, 2009 at 12:07 pmCheck out meniers disease. I have it and it causes diziness and extreme vertigo often called “drop” vertigo because when it hits you drop as the spin is so fast you are virtually blind. Leaves you with nausea also. Not fun stuff and will exacerbate whatever lack of balance you have with CIDP.
May 19, 2009 at 4:48 pmHey mon!
Y’all might try eaten more boudin and crawdads and some laripen good gumbo. It might cure everything. Least I found it helps me to forget. Any how a good dr. in Nawlins shore will fix you up right fine.
Much luck to you and may your health improve. You hear.:) 🙂
May 5, 2009 at 10:22 amHard to say cause for 4-5 years I was told carpal tunnel then when I finally got a dr. to look at my getting weaker it was about 10 months before we started treatment. The initial “look” said CIDP but it took months to rule out all the other possibilities.
April 17, 2009 at 4:43 pmI started IVIG in 1994. 5 day load and then 32-34 grams every 3-4 weeks. took about 4 days to see any change. before this I could barely dress or feed myself and walking was short distance only. I now hike 8-10 miles in the rockies and do about whatever I want. BUT, If I miss a treatment I “fall off the cliff’. good luck to you may you be as lucky as I am.
April 2, 2009 at 11:23 pmStacey,
You tell it like it is! That is the way to go. If you feel bad then by golly you feel bad and that is that.
Why not whip out a pencil and a pad and write a letter to the world telling all just how you feel. Then read it. Ask yourself if you really need all that stuff and want to hang on to those feelings. (Don’t kick yourself here. Feelings are feelings and real.) If you want to let them go put a match to them and say out loud “bye bye”.
Yes, it could be worse but it could be a whole lot better. Mad and sad and sorrowful are ok, just feelings, it’s what you do with them that counts. (O lord, I’m getting preachy here) Tie a knot in the end of the rope and hang on.
January 31, 2009 at 12:05 pmI 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.
December 22, 2008 at 4:38 pmThanks for sharing with us. I saved your story and will read it every time I start to feel sorry for myself. I am one of the lucky ones for whom IVIG works pretty darned well.
Thank you and have a wonderful Christmas and maybe even a miraculous new year.
December 12, 2008 at 6:34 pmI have been getting IVIG for 9 years with medicare. I think it must be done as an outpatient in a hospital for medicare to pay. Only once has medicare bounced it and I think the hospital had miscoded the claim. I guess medicare has paid for aproximately 200 IVIG for me.
Good luck. Hope this helps.
November 17, 2008 at 11:33 amI have been “on” IVIG for 14 years and ALWAYS get at least a CMP blood test between each ivig to monitor kidney function. Renal failure is always a possibility for those on ivig
October 31, 2008 at 10:10 amThanks Julie,
I am to see a nephrologist soon and with him and neuro I will suggest a change in the IG and lower rate. Much thanks.
October 14, 2008 at 4:46 pmI have made my reservation at the hotel and am sending my registration to foundation today. I will drive. Really looking forward to it. I found the two I have attended both interesting and helpful.
August 10, 2008 at 5:38 pmI was on IVIG for 11 years, every 3 weeks, it did nothing for my cholesterol. I hope it did for you. I do know that I have read that “mis-readings” on the blood work on cholesterol are somewhat common. For several years my total has been 150-158 and two weeks ago it jumped to 201. I think it was a mistake. Hope yours is correct.
May 27, 2008 at 11:49 amI have had CIDP for 15 years. I am now totally deaf in one ear. I have no idea if it is related to the CIDP or not. The doc doesn’t know either. 2 years ago CIDP put me into the ICU for 3 weeks. I went in with two working ears – not working really well but ok with two hearing aids. I came out of the ICU with only one ear working and 100% loss in the other. Who knows?
May 26, 2008 at 12:14 pmI am like PamH. Most of my stuff was lost when the site went down. I read daily and respond if I think I have something new/helpful that no one else has posted. I really miss that crew PamH. Especially Doc. He never put anyone down only gently corrected and really put out good info. He had been there and done that. After 14 years of this stuff I still find this forum very helpful.
Like Jeremy, if I can help I will be more than willing to do so, on the forum, by mail or in person (where possible.)
