Does this CIDP go away? When they start treatment for him is there side effects of the treatment. All the support people who have it, do u all can walk again?I’m really looking for some positive feedback.
It is my understanding, from what I have been told from day one, that CIDP is NOT curable but treatable. There is always "a chance" that it will go into remission as several people have reported in these discussions.
As far as walking, I have been a lucky one, in that I have always been able to walk fairly normally, although it is rougher when it gets close to treatment time. I have IVIG treatments every 6 weeks. I get a nice bounce back after each set of treatments. I am also lucky in the fact that they diagnosed my CIDP fairly early on. My CIDP is also not very agressive, which I am also thankful.
Good luck and hope the best !!!
Thank you. Does ur treatment have side effects
The most common are headache and nausea but I have experienced neither so, once again, feel very fortunate. It does make me a little tired but that is most likely from the liquid benadryl they infuse prior to the IVIG.
√ - Can't be cured (hence chronic). Treatment is available that will mitigate the autoimmune attack on nerve myelin.
√ - CIDP is a disease that effects muscles by attacking the myelin surrounding nerves, nerve roots or axions
√ - No one knows what causes it. No one knows why cures work.
√ - If IvIg works then it is one of the indicators that it is CIDP (or a variant)
√ - Be patient, the prescribed treatments and medications may take weeks, months or years.
√ - Side-effects are minor compared to the pain and dysfunction of advanced CIDP. However, very few people die from CIDP.
√ - Franklin Roosevelt had this disease (well GBS, actually) and he did what I do everyday; get in a pool, SWIM, and exercise with determination.
√ - All treatments do only one thing, they allow for the remylination of nerve axons that go to muscles (and sometimes sensory nerves)
√ - CIDP can be compared to MS in its seriousness and potential disability, excluding brain white matter attacks.
√ - You must constantly push the medical establishment for treatment. They think they understand CIDP, but most don't.
√ - I beat CIDP disability by intense exercise, SWIMMING and IvIg, however during relapse I sink back to a crippled whining man in great pain.
√ - Once you come to terms with this CHRONIC disease, that it will be life-long, then it is so much easier to live each day with less worry and more confidence to deal with it.
On your third check mark you have " no one knows why cures work", this is an incorrect statement for there is no cure for CIDP. Sorry. Gary
Do people walk again? Do they go back to work?
I walk much better after IvIG infusions, but I will never run or play naked beach volleyball again.
I was a classical guitarist in resort hotels. That lucrative profession went down the drain, as did coding database driven web sites (like this one) because of CIDP. Luckily, I've had some success as a writer.
The hardest thing I had to accept is that CIDP is a horrible chronic disease, a lower neuron disease that I will now have to build a new life around. And, there is no cure, only treatment when the right medication is received.
http://en.wikipedia.org/wiki/Lower_motor_neuron_lesion
Charlene Ako said:
Do people walk again? Do they go back to work?
My son have just started on Steroids does it work? Doctor had him on that for a month,then go back and see how he does. But doctor said if he doesn’t feel right before the month to call her.