Josh,

What did the neurosurgeon say?

I would encourage you to have biopsies. They can find many things in just the skin biopsy, such as amyloidosis. Also, for hereditary neuropathies, they can find out which one it is, if I am correct. The other thing is a muscle biopsy, for things such as myotonic dystrophy or other myopathies.

At one point they told me I had hereditary neuropathy, and I certainly was not thrilled to hear that. Turns out the autoimmune stuff is very stubborn as well, and I am just stuck with this. It isn't going away.

I went back and read that you have abnormal EMGs. I would check out the hereditary neuropathies and myopathies. Some ethnicities have an increased incidence of them. I think if you research this and bring studies to your doc, you may have better luck getting this diagnosis down.

Kitt knows a lot about hereditary neuropathies. There are also some really obscure ones. Check the neurowustl web site.

If you are having spasms, baclofen is a better drug than lorazepam, however, that too has issues, and you can't mix that with the opiates or you will get some degree of respiratory depression.

You have not been fully diagnosed, and need to get to a teaching hospital. You have neuropathy, but why? It is the why, that will bring about validation.

That said, no matter what you have short of terminal cancer, a lot of docs will not want to prescribe opiates, and really, they do cause a lot of autonomic issues. I have AN and opiates just about killed me, even tho I needed something for pain and asked for them and always used the responsibly. Also consider what happens if you have a car accident or any accident on these drugs.

Your primary may care more about you than you think. She doesn't want to see you dependent on meds.

When we don't want to hear something, we kill the messenger.