[Hermes]

Well I went to Johns Hopkins today for a follow up with the Pain Treatment Center. The doc is concerned that whatever is going on with my polyneuropathy is a whole lot more complex than origionally thought. He wants me to see a periperal nerve specialist at Hopkins.

OK that is what I wanted back in June. The neuro I saw there was a MS specialist. I was told, by his assistant, that he was going to refer me to one but when my skin biopsy came back negative for SFN he told me it was not indicated. He had given some recommendations to my local neuro for meds and just treat symptoms. Good-Bye. My local neuro referred me to the pain center when she ran out of ideas.

So how many more weeks/months before I get in to see the PN specialist? Who knows. What to do about pain until then? I was told I could use Lyrica again only at a lower dosage. Last time I was on it I became non-functional and I can't even say if it helped or not as I can't remember much about that time.

Guess I'll see if the local neuro has any ideas while I wait some more.

Sorry about the rant. It's been a bad day.

[rose_thorn98]

Well I hope you can see a PN specialist. I can't seem to find one within my HMO orginazation, but I keep trying. It will be interesting to see if they have any new info for you.

As for the Lyrica, have them start you at lowest dose possible..25mg. and then slowly work up. I'm on 50mg. 3 times a day and had to stick it out because I could not live with the pain. I took the first week off work...which was a major financial burdon, but had to do it. Now, one month into it I finally have no side effects. It took that long. Next week I'm going to increase it to 75 mg. But seriously, most Dr have no idea what low dose means, so be sure to insist on the 25 mg.

[daniella]

I am sorry about this. I am confused but did you call the PN specialist for an apt or was your doctor going to do that? In any circumstance I would call every day with the doc who is going to refer you or if there is a long wait a cancelation. I have gotten into doctors months in advance doing that. As for Lyrica I could not tolerate that med but other meds I have tried I started too high at times and when I tried them again I started low and worked up slowly to a pain relief dose. What about another med like Lyrica? Instead of speaking to the assistant could you call and say you need to speak to the doctor? I hope you get some answers,relief,and apts set.