Reply To: A few questions? New and scared

December 25, 2013 at 4:49 pm

I am also new. I was diagnosed after having an EMG nerve conduction test. That was in the middle of NOV. of this year. The pain started a year ago today and I had no idea what it was. I also have a cervical spinal cord injury to the neck from a neck surgery that went bad. It was just one herniated disc that was taken out. So I”m already on disability and have so many questions just about how that works and the expenses. I only get medicaid to help with my part d drug prescriptions.

So I started off with extreme pain in my buttocks, hips, and thighs. Then it ended up spreading into my pelvic region. So they thought I had bursitis and I went and had shots for that. Then a MRI, CAT scan, acupuncture, went to a physiatrist that for some reason gave me shots on both sides down into the discs of epidural steroid shots that didn’t do anything because I didn’t have anything wrong in my lower lumbar, on to a neurosurgeon that just sent me back to my neurologist because there was nothing wrong.

Finally my neurologist had me do the nerve conduction test both the shocking and the needle and that doctor who did that immediately said I needed a spinal tap and said I had this CIDP. So I waited and my neurologist called and said I had CIDP and what hospital would I like to have the spinal tap and the IVIG fusion done because he is 2 1/2 hours away and I could do this locally.

I’m having a lot of gladder control issues as well as weakness in my arms. I still haven’t had my spinal tap and I’m getting pretty worried that if this is CIDP and it’s gone untreated this long, how much damage am I having. I certainly don’t want to be wearing diapers the rest of my life so I”m getting a bit scared that nothing is happening.

Things I know for sure is I have severe peripheral neuropathy, extreme weakness, and extreme pain. I will leave out what pain meds I’m on but they are extremely strong pain medication and it really doesn’t seem to help much. I’m on a medicare supplement and I have no idea what they will cover and I don’t know how to get my neurologist moving on this now. Any advice?