Definitely would mention that at your next dr. appt if you haven't already especially that you were stiffer than expected, and still participated in gymnastics which can be a form of PT, and could have slowed your progression some. It's a wonderful sport for staying active and limber, did it myself as a child, and I think that along with the host of other sports I played is what kept me upright when my back went out on me.

Slouching is a killer and something I failed to learn to do as a child. After the knees and ankles went remembering C O B, has saved me from numerous falls. In just wish I could find an definitive answer for you. Again though best of luck, i hope you can find answers soon

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.