Ivig

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I was in the hosp for five days, 8-25 thru 8-29, and was given IVIG every day. Prior to this, my CIDP symptoms had grown to my feet feeling like bean bags and as if they were banded tightly, I was very unbalanced needing a cane to walk, could mot walk up stairs as my legs would not lift and when I tried I had to use my arms to pull myself. My hands, really fingers, felt like tuning forks, vibrating, and numbness was spreading from my feet to half way up my calves.

After the treatment, my feet have felt less tight, but still banded, my balance is much better I can walk without a cane. I can go up stairs without pulling myself. However,starting last Thurs., my feet began to vibrate and it has traveled all the way up to my thighs, my legs have begun to hurt. My entire hands all the way up to my elbows are vibrating and numbness seems to be setting into my legs.face and arms. This is scaring me.

When I had the treatments, I did get aseptic meningitis, and was pretty sick with a fever, and all my blood work went whacky.

Has anyone else had anything like this? My dr is going to do new nerve conduction tests next week. He said it could be regeneration or it could be getting worse. While I probably have had this a long time, being mis dx with MS for four yrs, this has all developed since last Oct.

If this is nutty, it is good old apple auto spell/fill.

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Hello - my name is Barbara. And yes, I do know how frightening it is when the "spider webs" spread upward to your face. It is indescribable. It brings tears to my eyes.

30 yrs ago, I was paralysed by GBS. It took 4 days, from back flips in the park to total paralysis. The hardest the scarriest the most difficult part was when the spider webs spread to my face. It is hard to control ur emotions. They are amplified by the breakdown of the myelin sheath. Fear and anxiety, at least this was true with GBS, I'm not sure how to phrase this, will aid in the destruction of the meylin sheath.

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It’s

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I’m going to have to learn how to twitter. I’ve never blogged or anything. Just E-mailed. I would like to know so much more about ur experiencing. I’m new to CIDP. What I’m going is like GBS in slow motion. But I don’t vibrate I used to tingle now I burn Like a sun burn. Pls take care. Stress is bad. And contact me soon.

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Hi Barbara, I understand your frustration, I have no idea how to work on this site but love it. CIDP is pretty much GBS in slow motion, but to me it is too fast. Since my IVIG, I am now a month out from five treatments, one a day for five days, I am changing daily. It is VERY interesting to note some things. I had been having some horrible neck snaps, when I turned my head one side or the other of my neck would snap and the pain was excruciating, it I were driving, I would have wrecked as you could NOT recover for two or three seconds. That stopped after IVIG and it was very frequent. The Dr. told me it could be due to CIDP and I can say I do think it was. Also, I was vomiting and having serious bowel issues, and I have no vomited since IVIG plus while constipation is an issue, the colitis which was painful and merciless, has stopped. It was several times a week. Also, another interesting thing. I have psoriasis and there were a few places on my torso that were scaly looking. I was not sure if they were psoriasis or not, but the scaly part fell off and now they look like moles, really odd. changed after IVIG. I also have had increasingly darkened, thickened skin on the tops of my feet and on my knees and that is seeming to correct. So this is very interesting. Also, I am getting feeling back, weirdly, in the areas that were numb. My concern is that I cannot life my left leg still, or it seems to be going backward. Also, my neck has snapped the past two days, which is when I realized it had totally stopped. The snaps have been much lighter but I think that I am beginning to need a treatment, if he will allow more, or something else.

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errors, chee, lift my left leg, ahem, and I have not vomited. Also, when my neck snapped, that was when I realized it had totally stopped snapping.

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Hello Comfortably numb

I've read ur blogs. Do u have an actual diagnosis? CIDP seems to be a catch-all.

What is this neck snapping thing? What is causing it? Do u understand why the Dr. would associate that with CIDP? I hope ur ok with me asking questions. Has ur neck been x-rayed? When was ur last MRI?

How the heck do I blog u? Comments r too short.

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Hello,

I understand your doubts upon hearing your Dr's ambiguity with your diagnosis. My private practice neurologist told me that CIDP is a diagnosis of exclusion about 15 months ago. Every single lab value (before and since IVIG) has been normal with the exception of elevated CK (an inflammatory marker). So other than symptoms and the EMG's he had very little to go by. I had a few doubts and went on to a university based neurologist and she totally blew it by telling me she thought I might have Lou Gehrig's. That was about 12 months ago. THAT dx went out the window. Since then my neuropathy has slightly worsened. So, hang in there, let your instincts guide you. IVIG has been of little help for me but I am staying with it while slowly reducing the dosing frequency from q3wks to q6wks. My symptoms have continued to be no pain but moderate to severe numbness, calf muscle atrophy which has resulted in a rather awkward and flat footed gait. I am often asked if I am limping. The best thing I have done is specific exercises, orthotics and a pair of shoes that helps me "roll" my foot as I walk. The orthotics have helped my balance a lot. My issues are only in my lower extremities. I have no side effects from IVIG (51grams x 2d q 6 weeks)
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Hello,

Just joined this great group. I'll post my history on another blog, but in a nutshell, I've had CIDP for over 20 years and have been on home infusion IVIG for the past 4 years with good success. I first tried IVIG in 1990 and it was not effective. I tried again in 1994 and had very severe reactions, even benadryl and prednisolone (IV) didn't help. I tried Gammunex in 2007 (first several times as inpatient due to prior experience) and have been doing 2gm/kg q 4 wks since then. I have a home health company covered by my insurance that sends a nurse to my house to start the IV and set up the pump. The whole process takes about 8 hours and I am able to d/c the IV on my own.

My main point is that things can change over time and there are different types of IVIG out there, so don't be afraid to try other types of IVIG or try it again at a later time. Hope this helps those who are still trying to settle on the best treatment for their own personal CIDP.

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Hi all,

Ok, I was given a steroid infusion three days last week, Tues thru Thurs, as an out patient at the hosp. 1000 mgs of solumed, prednisone, over an hour each day. Was not given a step down dose, just crashed.

Short of growing wings and flying, I will not take this again. I feel horrible. My emotions checked into overtime, no sleep the first night, only five hours night two. Crying over everything, calling ppl I had not spoken with in a looooong time who have done awful things to me, ahem, and stupid ish. On the verge at every second. Gained three lbs in one day, seems. Have lost it, but my mouth tastes like I have been sucking on a metal salt lick. I feel like my mid section is bound up, short of breath and my body is vibrating. My hands and feet hurt and are numb at the same time???

Unless I sprout wings and fly I will not take this again. My Dr. has not called to check on me, did not stop in to see how it was going. The hosp is a teaching hospital and he is heavily invovled in research. His "office", per se, is the clinic at the hosp. so he is there. I feel like I could just roll over and die. Also, I take a maintenance dose of prevacid, have for years, for refluv, gerd, esophagitis and I had an event Saturday night as if I did not take it. Pain in my chest, through to my back, just as I used to have it, which caused me to be on this medicine. I mean excruciating pain, vomiting, etc. I now read that this is a sign that can be a serious side effect, and so I am just alone. I feel like I could just fall over and die.

Guys, has anyone here ever had this treatment? I am to the point that I doubt the diagnosis, none of the treatment seems to work. I do not want treatments, and I am afraid to not have them. So, we never die? What do we do if we never die? Become vegetables? I feel like I am losing it, and I know part of it is the steroids and with that said, how long will my brain be scorched? How long will I keep thinking of my bird that died? You see?

I really am not doing well with this at all. I am terrified.

Jan