Can one have ‘residuals’ with CIDP?
AnonymousOctober 24, 2008 at 9:52 am
I don’t know if those are residuals, or just a lack of nerves firing to the muscles. I have a tremendous problem with only having so many times that I can do something. In PT I could do 7 leg lifts for example with no weight. And that was it. If I did 8, I couldn’t walk out of PT. THAT is what I have had to learn to manage with walking, using my arms and hands now, etc. I only have so many times that I can do something before it’s pooped and needs to recover. I believe hormones, time of the year, etc affect us, just like any person. Some days are better than others! Good luck!
AnonymousOctober 24, 2008 at 11:17 am
I do not what you mean residuals, as Gabrielle said, one may think is like running out of fuel and colapse.
But it depends on what you are doing, I had no explanation for that.
I can exercice in the electric walker for 30 or 45 minutes, and everything OK,
but if I try to climb a stair to a 3rd floor instead of using the lift I just can´nt,
my legs collapse in the 2 nd floor,
AnonymousOctober 24, 2008 at 11:17 pm
Thanks for your replies. What I mean is – I have read that people with GBS can have residuals (from initial attack) – so I was thinking – how much of my CIDP weakness is from old injuries (residuals) from previous attacks – As a lot of my “stuff” has been around since my first attack which was years ago. I also never had treatment after that attack as no one knew what was wrong with me for years after – so I had to recover slowly on my own.
AnonymousOctober 25, 2008 at 1:04 pm
I understand that GBS is monophase, what you call an “attack”, and after we have the residuals. But i thought that CIDP has no attacks, is continuous. The antibodies and macrophages levels are always high, going down just when we are on inmunosupresant treatments.
So I think there are no residuals, we are in continuous fighting between the antibodies and the nerves cells trying to grow.
AnonymousOctober 26, 2008 at 12:57 pm
I would call Residuals something that stays all the time and won’t go away. No matter what the situation is with the CIDP, the damage remains the same.
My case of CIDP was initially sensory. I retained my muscle mass and strength for quite a while, but the sensory loss was continual. My neurologist said that I would not recover the sensory loss or damage. I have not. Everytime I have a sensory loss, I have never recovered it. My big toe went numb in 1989 and is still that way. Three other toes went in 1997, the top of my feet went after that, then some patches on my calf, etc. etc. etc. until I am now numb probably 98% below the knee and some more up the thigh. My neuro said I would never recover that, and I have not.
As you know, these losses cause balance problems, walking issues, and massive lifestyle changes, mostly relating to doing less damage to myself, hot water, burns, stepping on things, uneven ground, sprained ankles, etc.
The neuro has said that I might get some muscular recovery, but the sensory loss, in my case, is unfortunately permanent.
I call that a residual.
Have a great day
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