I'm actually in pain management, as well. My PM doc is the one that said I should be seeing a university doc rather than local doctors. He's prescribes physical therapy whenever he thinks I need it, or I ask for it. He does prescribe opioids, he's never suggested a pump, but I don't think my neuro would approve (more below), plus I like being able to control how much I take as I actually take less than he originally recommended. He also has me do nerve blocks and other treatments as a condition of receiving the opioids. He had me on 30mg x 3 Oxycontin, I cut myself back to 15mg x 2 and he said, "you'll last about two month before you give into the pain."

He cut the script to 20mg x 3. To my credit, I lasted longer than two months, but wasn't very functional. I finally gave in and took the prescribed dose. He also gives breakthrough, but I've found that I don't need it much since starting Desoxyn for sleepiness (and that I often forget the afternoon ER pill). It also helps my eyelids and my bladder issue. It leads me to believe I'm missing a neurotransmitter since it seems to help more things than it was originally prescribed for. To bad it affects about 5 neurotransmitters, so narrowing it down would be tough.

The mayo doctor told me my bladder issues could be opioid use or FND, but the testing seems to counter both theories. According to RXList, opioids cause muscle spasms in the sphincter muscle. The EMG showed that my sphincter muscle functioned, but my bladder muscle wasn't receiving the signal it needed to contract/relax (I'm not sure which it does). He even scoped to double check this (a procedure I don't recommend). That rules out the opioids and I don't think FND/CD would be so specific as to affect one specific urinary tract muscle...I'd think it would be a case of all or nothing.

The urologist said I needed a bladder stimulator, but my neuro said she doesn't want to lose the ability to do imaging so she'd rather I cath when necessary.

My neuro's original assessment was that I had MG and another disease she couldn't identify, possibly SPS due to the muscle tension, but its going to be hard figuring out which is causing which symptoms.

I don't think my neuro's going to appreciate being told that she's wasted all the time and money treating the MG since the original blood work, EMG and fatiguable weakness all indicated I had it. Its possible she was too aggressive in treatment because she assigned symptoms to it that didn't go away and are due to the illness she was unsure about. But at my last visit, she said its in remission and anything I'm experiencing now is likely the other illness. Since the Desoxyn seems to help, she said to stay on it. I asked a rather pointed question about dopamine release from Desoxyn, hinting that we should try medicines that target specific receptors rather than amphetamine, and she thought for a second and went on without answering the question. I guess she didn't want to mess with the medicine when we finally found something that did some good.

If I get another opinion, its not because I think she's a bad doctor, but because she seems to be out of ideas on what's wrong and my work is insisting on a letter with a prognosis, which I can't provide without a dx (and they want it soon). Its why I thought Mayo would be a good place for a follow up.

My regular neurologist hasn't done any imaging/tests lately that would require me to go off the pills. She's asked me to cut back the Valium since its not helping my eyelids like the eye doctor thought it would, but hasn't asked me to discontinue. If she does need to do EMGs, it'll be easier to cut out on a lower dose anyway. She's trying to get me off the steroids too, but doesn't seem concerned about the opioids.

The Mayo doc wanted me off both the Valium and the opioids because she said they don't use them for intractable pain.

I had a hip repaired by a sports medicine surgeon and he said I had an unusual amount of osteoarthritis in the hip. I know it wouldn't explain the other symptoms, but I wonder if its a possible explanation for the trouble walking and that's just unrelated to everything else. My GP thinks that the osteo is likely a result of the muscle tension compressing the joint for so many years before I was on Valium. I'm planning to get lower on Valium, but don't think I'll be able to cut it out entirely...I'll stop when too much stiffness returns or the myoclonus starts again.