Hi I did try Hopkins. I did not find out anything new. Same symptoms, suggested same meds I was already taking. Told me possible Sjogrens and sent me on my way. Told I could come back once a year to see if my antibodies tested positive. My neurologist can do that for me. I think I actually ran into one of those docotrs that if they can't fix you they don't want to be bothered with you. The nurse practicioner I saw in neurology at Hopkins was great, as was the GYN. I see doctors in the suburbs were I live. I think I'll stay with them. I really trust them but kept looking for an answer. It turned out that no one could give me any different answers from my docs here. Just a lot of guesses. hopeful

I, too, was sent by my neurologist to Johns Hopkins on the slight chance that they might find something. The neuro there was extremely competent and thorough and they did a skin biopsy and a 2 hour EMG/ NCS. Lots of blood tests including some of the Athena genetic tests. Diagnosis was the same, progressive length dependent small and large fiber neuropathy, moderate to severe, with pinched nerves and muscle loss, probable CMT type 2. They said I could pursue more tests, but that there was no treatment beyond pain relief and nothing they could do. Hopkins is wonderful, but even they don't always have an answer. Sometimes there isn't one.

Can you get a referral to a Pain Specialist? Preferrably from your Orthopedic doc or whomever did your surgery. My experience has been that they may be hesitant to refer because in 'their' eyes, it might reflect the work they've done on you as 'failed' or something. yeah.

imo a person shouldn't have to jump thru all these hoops to get decent pain relief. Try stressing to him, or your PCP that your quality of life is in the pits.

I hope somebody comes thru for you soon

Rae

I've had an Idiopathic, progressive, sensory, symmetrical, polyneuropathy for 11 years. My PCP and neurologist tried every off-label drug in the chronic pain pharmacopeia. Finally they sent me to a pain clinic. This is where you need to be, at least until you can manage the pain on your own rather than allowing it to manage you. Once you have the pain under control, your family doc may be willing to take on the regular prescription refills with occasional Pain Clinic referrals as needed. One thing you need to understand, and I still struggle with this myself, is a cause may never be found and you will probably always have some degree of pain, all day, and every day. That being the case, you and the docs are left with comfort measures. For example, Lidocaine ointment rubbed into aching feet can tamp things down to a tolerable level. Having failed the normal pain management drugs, the doc at the clinic prescribed low-dose Methadone as a long-term, maintenance narcotic at the lowest clinically proven therapeutic dose. This allows plenty of room to move over the next 30-40 years before I find myself shuffling off this mortal coil. I use a short-acting narcotic for the inevitable break-through pain. Even so, I still have days when I don't want to walk very much and life pretty much stinks. Doesn't mean there aren't some good days here and there. Hang in there--you can eventually arrive
at some degree of acceptance of an unchangeable situation once you manage the pain.