A boat put out to sea...
 

I had an appt with my neuro doc today...in very diplomatic terms he said he couldn't do anything else for me. I felt like he put me in a row boat, pushed me out to sea, without an oar and my boat is leaking!

He did give me a prescription for Cymbalta to take (along with the neurontin, tramadol and amitriptylene I already take) and said to come back in three months. He said that he had checked me for everything and all had come back negative.

I don't know what to do. I did ask if he would refer to someone else and of course he agreed. He also said he would refer me to Mayo. So I guess I'll start again with another doc...

Would you give me your opinion? I live in ATL so there are tons of other neuro docs to see and I could be in that loop forever. Should I start with another local one or get a referral to Mayo or Hopkins? Do you know how long it takes to get into one of them?

I do have copies of my medical records/labs and if anyone was kind enough to provide their opinions I would be thrilled to post them.

treat yourself.
 

I am 76 years young and have had PN for 10 years. I used to always do what the doctor said. 10 years ago a doc. told me to take Zocor so i did. Within a year i had PN and on the side affects it said can cause PN. He never brought it up and i did not ask. I could not believe a doc. would prescribe a med. that could give you something there was no good treatment or cure for.

Since then i take no med. until i research it to my satisfaction. Doctors do not know everything and some do not care. It is all about money. My knowledge about PN has come from research and from this great forum.
I only go to my doctor to get pain scripts to dull the pain until i cure myself.I have learned of no doc. that knowes much about pn so why go to them.
I found a good pain management doc. that works with me to cure my pn.

Personal research and this forum are your best doctor.
Read my post in the stickies Neuropathy does improve by George 75.

I recommend Hopkins, since I go there and am not only
satisfied, but cannot praise the neuro dept there highly enough.
All my medical needs are taken care of in the Hopkins system, since I'm
fortunate enough to live close by.
My doc is the head of the dept, but if you call his secretary (Denise),
I'm sure you'll get a good neuro who's experienced in PN.
Dr Griffin's office - 410-955-2227

Also, go to www.lizajane.com
for spreadsheets to track your medical experience
and a list of all the possible tests to be done for PN.

I often feel the same way. I am like poison to docs I feel. What I did is sent my records to major places to see if they felt they could help me. Maybe if I were you is I would send my records and set an apt but try to find someone in your area too. The waiting lists can be unreal for these places. I have been to many of the same docs trying to find an answer and relief. It is frustrating but it just takes a different approach or thought to help but on the same note to confuse things too.Hang in there.

Thanks, George. I am treating myself. I have read everyone's post on the site as well all the info on supplements and have started taking them. I'm doing alot of research in an effort to make informed decisions. But, if Mayo or the Cleveland Clinic could possibly find out why this started that may or may not be an advantage to helping heal this.

Bob B - do I need a referral from my doc for Hopkins?

You may want to call and ask them if you do or if your insurance makes you have to. I know at Cleveland Clinic I didn't need one but at U of M I did even though my insurance didn't say I had to. Did you start the Cymbalta yet? I was on that for awhile too. Good luck in your doc hunt

Daniella - the neuro said it was okay to start the cymbalta. So far, I am nauseous as heck but he told me that would happen and to stick it out. So far I haven't thrown up on anyone at work but I sure though I was going to this morning on our department head...

I did hear back from insurance and I don't need a referral from the doc for insurnace but Mayo requires one and I expect Hopkins will to. I have heard from several folks lately who could not get into Mayo so I may be out of luck...but I'll keep trying.

I'm going to Hoipkins next week for the first time. You do need a referral from your doctor to get an appointment. My doc at UCLA (who is supposedly the PN guy, but not so good) knew one of neuropathy guys at Hopkins and sent him an email. Dr. Cornblath, the doc at Hopkins immediately replied. This was in June. When I called I was given the appointment for the 19th, so that should givre you an idea on the wait time to get in there.

I would say that you should be as agressive as you can to get an appointment. In my case I'm at UCLA, one of the major medical centers, certainly on the West coast, and they really know very little about PN. Get to a place that specifically specializes in what is afflicting you.

Thanks...I did get my referral from my neuro doc and have faxed off to Mayo. Mayo said I would hear back from them in about 2 weeks as to whether I get an appt., put on the wait list or if I am declined. I then ask my doc to write the same referral to Hopkins. I should get that on Monday and will send it off as well. I hope to get in somewhere that specializes, as you said.

I am still looking for a good neuro here in ATL just in case Mayo and Hopkins fall through...

Lumbar Puncture
 

Hey guys -

I have a question about a spinal tap. I see that many of you have had a spinal tap or two with PN. My doc did not do one. What are they looking for when doing a spinal tap? I did have an MRI of my head and he said "it was perfect, no white spots." Is that a definite way to determine I don't have MS. I thought you needed a spinal tap to rule that out...don't get me wrong, I don't want one just to take I've checked it off the list. But if it helps to find out what causes my PN I would certainly have it.

AAUUGGH! I really don't hope I have to have one now...

they really are not that bad at all, just make sure you lay flat after the procedure, dont let them rush you out for at least an hour or two until you feel ok. then after that lay as flat as much as possible for the next few days to avoid the headache. I laid down in the back of an suv on the way home. the procedure itself was not painful at all.

My uncaring neurologist did mine in his office and I had driven myself there that day. I made it home on shakey legs and did not have any trouble other than my spine is crooked and he had a hard time locating the place to insert the needle. Took some time and he graciously (ha) let me lie in the offfice for some time until I felt I could make it out of building. I really was okay after that. To do this he had me hug a pillow so my spine would be bent out. That tired me some but the actual stick was not too bad. I survived okay.