CIDP & Wheelchair
AnonymousJuly 5, 2009 at 8:14 am
Those of you with CIDP, how long did you have CIDP before you were weak enough to need a wheelchair? or have you not had to be in a wheelchair?
I ask because some of you seem to have had CIDP for many years and are still walking with aid of cane or walker. My son’s symptoms started 9 months ago (oct) and was dx in Dec (7 months ago) and had to use a cane or walker by January and a wheelchair as of April and has been in a wheelchair since April.
I just wondered if anyone else had any similar experience with being in a chair so soon.
AnonymousJuly 5, 2009 at 12:50 pm
I use a wheelchair when I am out in the stores or where I would be walking lots or places where there is no where to sit and rest.
I find I can’t go far without being in tons of pain and being exhausted.
I bought a really cool wheelchair from Costco.com
just 14.8 pounds the UltraLight Freedom Transport Wheelchair $159.99
It is very leightweight and folds down into a travel bag that fits in the trunk.
AnonymousJuly 5, 2009 at 5:24 pm
I use a chair about half the day, and when sitting down in public will not be available.
How long? several years.
There are several CIDPers who have had more severe attacks and were wheelchair and worse in short order. In many other cases, the attacks are relapses and recoveries. In other cases the progression is slower and steady.
With such variation, there are more differences between us than there are similarities in presentation.
But, Have hope. In cases like yours, once the progression can be slowed, or stopped, healing can begin, and some recovery may take place. I certainly don’t know all of your specific’s, but many people have gone from bedridden to walking, and from wheelchair bound to mobile.
I hope the treatment regimen is aggressive and the negative aspects can be stopped. then healing can begin.
AnonymousJuly 5, 2009 at 9:37 pm
With the inevitable weakness I think many of us were in wheelchairs for part of our recovery. I weaned myself of the walker and the wheelchair somewhere between 9-12 post-diagnosis. Each of us with CIDP is very different though and the thing I always used to measure my recovery was progress, no matter how small. Please keep that in mind.
July 5, 2009 at 9:51 pm
how often is your son getting ivig? Maybe it is not enough. It is possible that ivig alone may not be enough. Kevin was very young, 10, now 12. Although he did not need a wheelchair, he could not walk the last couple of days before dx. Once we were dx and ivig was given, he was able to run down the hospital halls. had he not recvd constant ivig, still till this day, he would be in a wheel chair I am sure. Can you give us more info as to his treatment schedule and amount?
good luck to you.
Dawn Kevies mom
AnonymousJuly 5, 2009 at 11:07 pm
I think age is going to play a huge factor with how well your son recovers.. I think many of the cidper’s on this site are probably a lot older than your son… (40’s and up)… I think you should keep in mind that there are different degrees of nerve damage people get, and that relapses and recoveries go hand in hand…. Also, not everyone who has cidp is walking with a cane or in wheelchair, same is true for ms…. Hope that clears some stuff up for you…… I hope that the message you take away from this is that it isn’t all gloom and doom.. There are treatments that work, and many people recover and lead normal lives.. Take my case.. My neuro.. says that 80% of cidp cases he catches with in two years can be put into remission… So far so good…..
AnonymousJuly 6, 2009 at 9:39 am
I was diagnosed with CIDP in December 1998 and within a years time I became wheelchair dependent. I cannot stand freely and stay on my feet, I’d be on the floor in seconds. But if I hold onto something sturdy (not a person) like a walker, I can do a very limited amount of walking around my apartment.
I know that I am life dependent on a wheelchair, but I don’t think I am typical of the outcome of a person with CIDP, that’s another story though. I roll to the beat of a different drummer.
AnonymousJuly 6, 2009 at 9:55 am
Thank you all so much. He must have a agressive type of CIDP because like I said before he got sick with a cold in Oct 2008 and by Dec he was dx with CIDP and had to use a walker and cane by january and then a wheelchair by April2009. He has been getting IVIG since the dx except when he was kicked off our insuranc. The longest he went without IVIG was 9 weeks and thats when he ended up in the hospital for the 2nd time and in a wheelchair. He has been in a chair now since April and cannot stand at all. He was getting IVIG every 6 weeks and we have been fighting our current neurologist to give it to him every 3 or 4 weeks. so he finally changed it a few weeks ago. he gets his next IVIG tomorrow, wednesday and thrusday and he also raised the doseage amount to 57 mg every day he gets it. and he only gets IVIG. When he was in the hospital they gave him PE every other day for 10 days and then IVIG we saw more results with that but our sueor said no on doing PE again right now. that is why we are going to see Dr Lewis in Detroit on July 21.
Jerimy I will call you later today. Thanks
AnonymousJuly 6, 2009 at 1:01 pm
I was diag in dec. 2007. I was not wheelchair bound, but I had to hold on to something because i could not balance. I was very weak , no muscles in legs. I am back to standing alone but my feet hurt ( like theres no muscles around my feet , like standing on my bones and they feel like there in a clamp). I can walk but i can not run. My hands still a problem. I will be going back to Neruo. next week to see if i can go back to work. Been off since feb. 09. Tell ryan hi and hang in there.
AnonymousJuly 6, 2009 at 6:51 pm
[QUOTE=Rhomcc]Those of you with CIDP, how long did you have CIDP before you were weak enough to need a wheelchair? or have you not had to be in a wheelchair[/QUOTE]
Hi, I’ve been in a wheel chair for 16 months now because with a rollator I still could oinly walk with difficulty, lost control once and broke a knee. I am using it all the time but are able to slowly go up and down steps if there are good railings. I have a CIDP variant which started in 2001. It is progressive and in my case does not respond well to IVIG or Rituxan. Because of my age I don’t want to consider chemo.
AnonymousJuly 8, 2009 at 3:19 pm
norb- what kind of CIDP variant do you have? Ryan doesn’t get much out of IVIG either. he only gains a little bit of strength from it nothing signifficant. we are hopeing our neuro can do a different treatment or maybe he just needs it closer together. he was getting it every 6 weeks and this month its 4 weeks if thid doesn’t do much then I will tell him Ryan needs it every 2-3 weeks and if that don’t help then I will push for something else.
Kthiemann- what treatment did they do to get you out of the wheelchair within 3 months?
AnonymousJuly 8, 2009 at 7:00 pm
[QUOTE=Rhomcc]norb- what kind of CIDP variant do you have? Ryan doesn’t get much out of IVIG either[/QUOTE]
It’santiMAG IgM neuropathy also called Paraproteinemic Demyelinating Neuropathy ( PDN). It delelops slowly over years later in life, tends to be primarily sensory. Never heard of a child coming down with it.
July 12, 2009 at 12:40 pm
I was diagnosed in 1994. I have been in a wheel chair only one time when I had a big time relapse that basically paralysed me. I walk and hike. I get IVIG every 4 weeks. If I fail to get the IVIG I go down hill extremely fast. If I did not get IVIG at all I am certain that I would be in a wheel chair. I am one very lucky guy.
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