Reply To: Three questions

February 6, 2007 at 12:56 am

K C’s Mom,

CAN CIDP “go away”?

CIDP is the bodies immune system attacking the myelin sheath that surrounds the nerve axon. In order for the immune system to attack “self”, a mechanism is broken. The body has a rule — T-cells do not attack “self”. The big word is Major Histo-Compatibility complex (MHC). Basically that means something like this – each cell has an ID card that it sticks oput when a T-cell comes by. That identifies it as “self” and the T-cell does not attack it. If the cell is invaded by something, the ID card presented is different, and the T-cell knows to attack and destroy.

In CIDP, screwed up T-cells don’t read the ID cards stuck out by healthy myelin cells correctly. They think the healthy cells are invaders, and proceed to destroy. Since they see a lot of myelin all around the body, they replicate to attempt to destroy all of the invaders (your healthy cells). The damage multiplies.

In GBS it goes completely haywire, and mass destruction occurs. But then for some reason, the body recognizes this problem and sends a new army of cells to destroy these “bad coded” t-cells. And they win. GBS stops and does not come back.

In CIDP, it continues. For those relapse/remitting people, the cycle repeats over and over. IVIG treatment floods the body with “good antibodies” to help overcome the “bad anti-bodies” and spur on recovery.

CIDP can only “go away” when all of the bad antibodies are gone. If there is only one, it can replicate and continue the mission. So you take immunosuppressants to supress the immune system, and keep it less active. The rest is pain management to deal with the problems that arise from the damage.

They say 5% of CIDP patients go into spontaneous remission for no reason. So, until there is a way to do one of three things, stop replication, stop damage, or rid the body of “bad guys”, we will still have CIDP. 1) If the bad T-cells can’t replicate, the body might find a way to attack and destroy them. 2.) If there is a way to protect the myelin from destruction, no damage would occur. Stop the cells at a chemical level from doing what they are designed to do. 3) destroy the immune system entirely, and hope it “reboots” cleanly, without any “bad guys”. Maybe there are different ways, but I think this is the thrust of research now.

Plan on having it, but you can deal with it and minimize problems.

Question 2 Heat. Hotter temperatures aggravate my condition. I fatigue faster, and it seems like CIDP gets more aggravating in the summer. I tend to have more losses in the summer, and recoveries are slower. It has been getting consistently harder each summer for the past 7 or 8 years. But I am also less tolerant of cold as well. Either extreme seems to be affecting me worse each year. As a result, I try to care for myself and not expose me to these problems. I see no use to push limits in a challenging atmosphere when I now I am going to lose. I try to push when I can handle it.

I AM NOT ADMITTING DEFEAT !!! I am realistic about my condition and try to deal with it the best I can. I try to do the best I can with what I have. I am learning my limitations and the price I pay when I exceed them. I helped the Boy Scouts a couple of weekends ago. I was on my feet way too much cooking and being active. I was flat in bed for 3 days completely, and I am still trying to recover two weeks later.

Question 3 How much is too much? Very personal. But when you over do it too much, you will pay.

Look at it this way, as CIDP progresses it affects sensory nerves, and muscle nerves. Each muscle fiber has its own nerve telling it when to fire, or contract. If the nerve fails, that muscle fiber stops working. Let’s make an example — If you have 100 muscle fibers to lift 100 pounds, that’s 1 pound per fiber. If you lose 25 fibers to CIDP damage, it is 75 fibers to 100 pounds. Each fiber gets 1 pound, plus 1/3 pound to make up for the ones not working anymore. Understandably you would fatigue faster, and not be able to do as much work. As the muscles get stressed, it takes longer for them to recover. Less mass doing the same work.

So when someone tells you to do more, you are just overtaxing the system more severly. If you don’t use it, you will lose it. That is for sure true as well. So how much should you do?

That is so individual. You have to do some, but you don’t want to do too much. Too much puts you in bed, and it hurts. I try to do what I can, and try to stop when I should. Sometimes I just have to sit and stop. I apologize and sit, or lay down. After several years with CIDP, my kids understand. (They are now 20,18 and 15) They were 7, 10 and 12 when I was diagnosed. My wife wishes I would stop sooner, because I am down so long when I over do it.

As to the meds doing it? I don’t know. Between the CIDP doing its thing, and us doing things we shouldn’t, what is left?

The shoulder thing could be stress and tensed up, locked up, overtaxed muscles. Get your significant other to give you good shoulder rubs and relax those muscles. At the worst it will feel good!!! I don’t know what that answer is. Shoulders, neck, and those little muscles around the base of the skull seem to tighten up easily and cause pain.

Sorry so long, but I hope it helps.

Dick S.