Originally Posted by rondeej

Hello everyone! As my thread title says I am a newbie and have posted on the newbie welcome board. It was suggested by glenntaj that I come over to this board and post in detail the problems that my husband has had and is having. I should state at this time it is my hubby of 33 yrs that was just recently (8 weeks ago) diagnosed with CIDP. This is a very long story and I hope you all bare with me. But we truly are at ropes end and hoping for some suggestions, stories , and hope from those of you that have been thru this. Here goes.
In May of 2007 hubby was diagnose with stage 2 B-cell lymphoma high grade aggressive with folicular involvement(tumors erupting all over his scalp)After 8 rounds of Chop-R chemo, he went into remission and has remained there thus far. At the time of his chemo he experienced the neuropathy caused by the chemo but it disapated within 6 months of stopping said chemo.

In August of 2008 he was diagnosed with stage 2 melenoma on his upper back and lower neck. He had to have surgery to remove this including one lymph node. It took a 2-3 mm depth and 12 inch long across his back to get it all. He has not had a recurrence at this time. No radiation or imuno therapy or chemo was given for this.

In September of 2009 he was diagnosed with squamish cell carcinoma under the toenail of his second toe with resulted in amputation of toe to the foot.
Again, no radiation, or any other type therapy as they claimed to have gotten it all.

In the middle of all of this, he began to have symptoms of the neuopathy again. Pain and numbness of both lower legs and feet, and also his lower arms and hands.
Along with these symptoms, he has began experiencing severe and extreme cramping in his legs and hands. To the point his limbs would disfigure and distort into something that looks like a contortionist would do. He also began stumbling , falling, choking, drooling.

We have been seen and tested by neurologists, oncologist, rhuematalogist, and orthopedic doctors. I cannot even begin to list the test that he has had, including numberous blood test, pet , ct, mri's, nerve conduction, muscle byopsies, removal of lymph nodes, eeg's, and others which I cannot pronounce much less spell.

With his recent diagnosis, they put him on 40mg of prednizone daily and 350 mg. of soma 2x daily. With no relief of any symptom. They are now talking about doing IVIG therapy.

One of the biggest questions we have right at this moment is about the muscle cramping and spasms. We have noticed there is no one else mentioning this symptom with CIDP. And are curious to know if anyone does have these symptoms. So far they doctors don't seem to be so concerned about that part, but it is the part that gives him the pain. His numbness does not give him pain, but makes him so exhausted.

Any help in the form of your story, suggestions, questions for us, would be so much appriciated.