Thanks. The appt. with the new neuro isn't until next month and I guess I should try to make an appointment with a rheumatologist. I'll let you know what they say.

And just to be clear, I'm not knocking anyone who has conversion disorder. I have enough psych issues that I would never do that and it would actually be a relief to think everything is in my head. I just know that it really doesn't fit in my case.

Yeah.. I wouldn't think conversion disorder either... It's not the same as being a hypochondriac, which is also a true disorder... And from my understanding it generally picks 1 'area' of attack and wouldn't become progressive in a sense, and after 15 years of looking for an answer you would think a pattern or trigger would stand out.... The legs stiffen up before a test while in college, in large groups of people, moments of heightened emotion, or after eating, smelling or seeing something that might remind you a trauma you didn't know you had...

They might be small things, but if you've been wracking your brain to figure it out even if not for the past fifteen years, but in more recent years, it's probable something would have 'stuck out'. But improving some with PT, and receiving some benefits from medication, is a bit too much to call a placebo effect, as the mind should have run with it when benefits were seen.

My SIL has conversion disorder, hers attacks the digestive tract, it took a few attacks, some almost life-threatening, but after a bit the doctors were able to diagnosis it, she was initially treated with placebos, improved remarkably... Then it was ah-hah, now what happened before each attack? Money issues, money issues, money issues... Her treatment is let my DB handle the finances, stay out of it. She's been fine for three years now, it doesn't make her crazy, or mentally ill, she just physically can't handle the stress when it comes to money, and knows she needs to talk to people when she starts to worry even staying out of the family finances.

I just looked up the MD symptoms, and they actually seem to fit. Aside from the obvious ones, I had/have LD issues, scoliosis, the heart arrhythmia. I'll be sure to ask about it when I see the doctor.

I'm still really sore, but the swimming last night and large doses of ibuprofen seem to have loosened up my muscles so I can walk normally now. The last week and a half, my hips have tightened up/collapsed halfway through my stride making it hard to even use a walker. The doctor from Mayo told me to do the exercises they taught me, but I found it impossible since my hip mobility was normal in front of me, but nil behind me so I couldn't complete the movements.

I even tried doing the things that conversion syndrome Websites suggested, like singing while you walk, which is supposed to change your gait pattern by letting automatic processes take over while you think about something else. The results were that I fell because my automatic processes weren't doing any better than me. Its strange that it took another patient to tell me that if I can't walk, I should swim and then try again. A doctor telling me this a week ago could have saved me a lot of trouble.

I actually do believe conversion syndrome is real, I just don't see how it can cause the array of symptoms I have, like the heart issues. And I'm afraid I can't use Mayo now for a couple reasons. Now that they've dx'd me with it, I'm afraid its going to be their go to cause for everything.

Also the doctor wants to take me off benzos. The dose I'm on now allowed me to continue working because my muscle tightness/spasms were too painful to sit at my desk. The original dose prevented Myoclonus that came with uncomfortable electric shock sensations. While I don't like the mental fog from the benzos, I don't want to go back to being shocked randomly through my day. I'll talk to the Mayo doctor about this when she calls back

Incidentally, when the myoclonus was at its worst, I did develop jerks that didn't shock me and in hindsight I think that these may have been a conversion type reaction to the actual myoclonic jerks. They went away shortly after the shock type jerks were under control. So I'm not completely dismissive of Conversion/FND, but see the overall condition as closer to what happened with my knee.

Long time ago, my knee was collapsing on me whenever I took a step. The MRI came out clean. After three weeks, the orthopedic told me there was nothing wrong with my knee, it may be neurological or psychological, but if I really want he's willing to do an exploritory scope. After some thought, I told him to scope it. The result was that I had a three inch tear in a layer that doesn't show on imaging and needed to be sewn up. He said he'd never seen it before, and it looked like that spot had just dried up and ripped.

My body obviously has some strange neuro and/or rheumitology processes going on in it and I think the FND dx is her way of justifying not being able to explain what that process is. For my part, I'm going to keep searching for a dx.

Bear in mind that doctors only read about symptoms but most don't experience them. ("But it's not supposed to do that!") I hope you get answers as yours is obviously not a textbook case. I've had things prescribed that I didn't react well to and it confused the doctors.

Unfortunately the benefits of swimming were short lived. My legs started feeling tight earlier this evening. In the last two hours, they've gotten progressively tighter like a rubber band being pulled (around the IT band area). And my walking is almost back to where it was yesterday. I guess when the usually happens I'm asleep and wake up this way. Its really uncomfortable when your muscles just start tightening on their own.

Took some baclofen and hopefully it helps. Can't go to the pool until tomorrow morning. Is there a point to going to the ER for something like this, or do you just try and manage as best you can?

To er, or not to ER... Sometimes a daily question for me. It really depends on you and the ER you're going to... Most ERs if you have an ongoing issue aren't going to do much, they 'might' try to give you some short lived relief, maybe a sailor's cocktail as our ER terms it (relaxant, narcotic, Benadryl) and out the door you go, with instructions to see a 'real' doctor. But every so often you might happen upon a specialist who happens to be working that night who can point you in a direction of a dx, but probably won't do much right then.

And rarely will they admit you just because of pain or spasms, so anyway it goes, you 'might' be given a few hours of medicated relief, or you might be treated like someone who's just seeking drugs and tossed out. It's all really up to the doctor on call, there's good one and terrible one all around the world.

That being said, I have gone to the ER for cocktails on occasion, when the pain just gets to be too much and the medication doesn't even begin to touch it. Especially if I think it might be a bright idea to try one of the million and one ways I've thought of for suicide, not because I want to die, but there's more than one way to kill pain, kill it off at the source! But then the shots they give me tend to act as a reset button. I can get caught up on some sleep, helping the usual meds to work better for a bit and repairs my psyche knowing I can still get a breather from pain with enough drugs.

So if you're looking for a quick, though likely short-lived relief, just enough to start the battle again, by all means go to the ER. If you're wanting a dx, change of meds, or more permanent fix...don't bother, would be my advice. Unless it is an emergency like its hard to breathe, you're breaking out in a cold sweat and feeling really shaky/dizzy, experiencing loss of consciousness, heart is racing or sleeping.

You could try some of the things for muscle spasms to get relief, volteran gel works well for both pain and calming the muscles some. It's sort of like bengay, different medication, but you apply in the same manner. You could also try applying a heating pad on low to the major muscles like your thighs or lower back, and massage there's info on the net with pictures and instructions.

For myself I tend to go a smidgen higher than a hand widths above the joints, then apply pressure with the thumb, just below that of 'white knuckling' but still hard pressure, follow the muscle down to the joint, remove and start again in one clean movement starting from top to joint, working across from the interior outward (right leg start from the left and work towards the right) doing the tops of the thighs but the back of the calves where the stronger muscles are. Works much better if you apply a bit of heat first to try and make the muscles a bit more mailable and moisturizer to keep the thumb from catching on the skin.

It probably won't get you up and running but might help relieve the 'tight' feeling while you're relaxed.

I decided against any ER visits. My experience has been when you want a few hours of relief you end of admitted for several days. When you want to be taken seriously, they give you an oxycodone and shoe you out...

I did go swimming today, which loosened up my joints again. I added some stretching in the sauna...I'm hoping I can get more than a day out of it this time.

I'm not sure what to think now. I reread everything that Mayo sent me after my visit there last year. The doctor was very non-committal in her letter, and blamed some symptoms on drugs that I'd started after first having those symptoms. Like the double vision, which she said is caused by Valium. I had double vision years before starting Valium, though.

They're neuro-opthemologists clearly thought I had MG based on an eyelid twitch that has a very low false positive rating. The treating doctor kind of dismissed their opinion when I spoke with her recently. Blood work was negative for MG, and borderline positive for SPS, but this was after numerous infusions, high steroid doses and surgery to suppress my immune system. The original MG blood work was positive, my conclusion would be that immunosuppression worked, but I guess that would mean any negative antibody tests would have been suspect anyway.

The MRI's were clean, but I was heavily immunosuppressed--if MS is a possibility, would this have affected the MRI? I've been slowly coming off the steroids for about a year, and the infusions have probably started to lose their effect.

They didn't observe the stiffness that other doctors and therapists have commented on, but I was on 100 mg of Valium at the time. They told me this could affect their observations and their EMG, but that didn't make it into the report.

The only thing that was conclusive, other than the eye doctors report, is the physical medicine report that I have a gait disorder that responded well to a few sessions of therapy.

This just leaves me more confused. They want me to come back for intensive gait training. I don't think I need it since I've been walking fine for a year, and I can walk fine after I've done laps and stretched in the hot water.

It seems to me like it was so easy to fix because with 100 mg of Valium and no immune system, the walking had become a bad habit at that point after so many years, but the disease processes were controlled. Now that I'm taking less medication, something's causing symptoms, again.

As I said earlier, I'm not the poster child for mental health...I've ignored bouts of depression since being chronically ill can have that affect on you. And my personality would probably best be described as borderline.

But I have a lot of trouble believing my medical symptoms are conversion disorder. Especially given that the muscle issues were first observed at three years of age, I have a first cousin with an extremely similar condition (whose refusing treatment so we can't really compare notes), and there's a history of unexplained neurological illness in the family that goes back several generations. As far as I know conversion symptoms aren't inherited.

Since I can obviously walk after moving in the water and stretching, my inclination would be to stay local, make sure to exercise daily, and find a neurologist whose willing to look for an underlying cause.

I should probably also find a pdoc for the issues I've been ignoring. Not because I think the conversion diagnosis has merit, just because its probably healthy to do in general.