Basic questions on CIDP
AnonymousAugust 2, 2011 at 5:16 pm
Why does a stem cell transplant help in curing CIDP?
Why does CIDP present with so many different symptoms?
I have some moderate pain all over my body, neck, shoulders, hands, stomach and feet. The latter is usually worse than any other part. But the symptom that caught my attention and eventually led me to a neurologist was an inability to swallow. I was dx as having CIDP after EMG and blood tests were done. Ivig was suggested over ten hours due to slow heart rate. However I underwent implantment of PM to raise heart rate to 60bpm and then obted for Plasmapheresis, which improved my swallowing almost from the first treatment. I continue on that every 28 days. I did two more Emgs and my neurologist still felt that original dx was not completely correct: she felt that some MG was part of the problem. Lately she said “idiopathic” and I knew she was as much in the dark as I was.
Presently my digestion has gone south with my balance and I’ve had constipation for the last year and half. I never suffered from any of this before. I also have long bouts of PVCs after I eat, especially in the morning. I would greatly appreciate it if anyone could relate to any of my symptoms. The last thing I read concerning my condition was that I was between CIDP and MG. NOw is that possible? Thanks a bunch.
AnonymousAugust 2, 2011 at 8:57 pm
I cannot relate to those specific symptoms. If I could, then I’d seek out specialists. Not until I got an answer, rather until I started getting better.
In my own words, Stem Cell Transplant works by ‘killing off” the so called rogue (attacking) cells and putting your own good, yet untrained, immune cells back in service. Theoretically the bad ones are killed off for ever.
However, there is some chance the original condition will return.
As for Myasthenia gravis (MG) It doesn’t damage the musculature of the heart or the gastrointestinal tract, according to the Muscular Dystrophy website.
And, while you are reading the info please note the similarities between CIDP and Myasthenia gravis (MG) in symptoms, clinical diagnosis, emg testing and finally, treatment options.
AnonymousAugust 3, 2011 at 12:18 am
In terms of specialists, my Cardio says the PVCs are benign but they come so often at times that they make me dizzy. I’ve used BB and they worked. Unfortunately they also lower BP and that’s a no, no, if you’re undergoing Plasma Transfers. CIDP symptoms do include constipation and digestive problems, although they’re not common. After all we have PN all over the body. Wherever a nerve is damaged you’re going to get some symptoms. In respect to MG you’re right with the exceptions of the breathing problems the latter can have. Lately I’ve come across a number of people that started out with GB and were later dx with CIDP. That doesn’t surprise me, since they’re very close in symtoms. But it can also mean the neurologist dx incorrectly.
I just don’t know where I am anymore. I’ve come to believe that it takes a very gifted neurologist to dx the neuropathies well. Most of them don’t want to go near them because they just don’t understand them. I’ve seen three neurologist and they all gave me a different dx. As I said in my previous post, now I’ve fallen into that 30% called idiopathic
Thank you so much for answering my post.
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