Hi, I'm new on this board or rather in this "chat" environment. My husband is reaching his 4th year of Peripheral Neuropathy, which is not a disease that is mentioned in the Content section.
It is a painful syndrome that affects the sheaths on the nerve endings, causing pain, numbness (yes all mixed up and complicated) burning sensation, and also a feeling of the feet are being stabbed with broken glass. I has progressed from the feet and is now just over his knees. Also in his hands which is not progressing thankgoodness as quickly as his feet and legs. Because it is the Pheriperal nerves in the sytem it also affects his balance. His diagnosis changed mid last year, to CIDP, Chronic Inflamatory Deyelyminating Polyneuropathy, which is a more aggressive neuorpathy.
We have been in the hands of a Pain Management Centre attached to a hospital, so he has been on a lot of meciations and still is. He had needles inserted during a proceedure into his Ganglion Nerves which only eased pain for a couple of days. Next it was a Neurostimulator implanted in his gut and wired up his spine and a remote that he could activate himself according to his pain levels, it was quite a success for a few weeks, then an infection set in and everything had to be removed.
Now we are with another new Neurologist who has diagnosed the CIDP, and confirmed his diagnosis with electrode conductivity tests. He has had one Polygam, and infusion of cleaned plasma that helps to stop his antibodies fighting each other. He is supposed to have had a 2nd infusion 6/7 weeks ago to follow up on his first treatment, this has not happened yet. To be effective it should have been done within a month of the first.
This illness the same as any of yours has changed our lives, we cannot make any plans because good days and really bad days don't give us any notice. We are also tired of being on the trail of different specialists one after the other (and it's expensive) !!!!! However what can one do but keep trying to find, not a cure anymore but a treatment that will help. I wish the same for all of you.
PS Peripheral Neuropathies can be the result/side-effect of Diabetes, Cancer Treatment, Lymes Disease,Heredartary, Guillane's Bar disease, exposure to Toxity, and many more that I can't come up with right now, my husbands is Idiopathic, which means cause unknown.