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.

Never fear, you're not alone in ignoring signs of depression, I am about as guilty as they come. I completely ignore loss of appetite, lethargy, mood swings, and sucuidal/homicidal thoughts. Though I have told my pain mangement doc... One of the first questions he asked after going over my symptoms of pain was 'any suicidal thought?'

My response was 'I just got done telling you my body is quite literally ripping itself apart for reasons completely unknown to the medical community I've been in contact with to date... So you better be asking looking for the response YES! Big time! To ensure my mental health, since that's the response any sane, rational person would give.' Ditto on the depression, going from a bright future ahead as a horse trainer to a glorified bed warmer.

While depression is considered a 'symptom' of a whole host of disorders, I still am of the belief that it's more a side-effect, at least for me. Mine seems mostly situational. Talking about it isn't likely to help, though maybe drugs will work if they fog me up so much that I can't function, or realize how much pain I'm in and how much I'd like to go out and play. So I largely ignore it, I believe I know what it stems from and I set out to alleviate it by accomplishing the things I still can. Going to college had really helped, but the health has taken that away as well.

Okay getting a little off track from what I was going to say, but are you seeing, or have you thought of seeing a pain management doctor? Not a pill-mill one, but one who might have some other ideas, injections, PT, pumps... If you're taking that much Valium and still not finding 'relief' there are medication pumps that inject right into your spinal cord, reducing the amount of oral medication you need to take and that are self timed for release so you never have to worry about missing a dose or being late because you were sleeping or busy.

As with all things there are possible complications, side-effects and the like, but the majority of them are no worse than possible side-effects with taking medication orally.

Also while I know the mayo clinic is often thought to be the 'end all be all' of medicine, if they're not seeming to take you seriously, you might want to see about finding some different doctors,just be sure to get a copy of all your records and any images they've taken. It might take a bit of work but before you let any doctors start ordering more tests, make sure they 'fit' do they listen to you, or seem to focus on only one or two of your complaints, do they allow you to pose questions and answer as best they can even if it means 'I don't know?' Or do they blow you off.

I have found the best place to start is at the office level, if I call does the staff take time to listen to me? If I leave a message do they reply in a timely manner? And asking simple things like, how long is the average first visit? (It really depends on the pt, is an excellent answer) and how many appointment slots are available each day? (I find the best doctors have 10 or less in an 8 hour day, when it comes to specialists. Or better still 'new patient' days/blocks)

It seems to me, that if your current doctors know the medications you are taking can 'throw off' the tests, why wouldnt they ask you to cease taking them? If they're later just going to blame them for anything they see or don't see. Now I know many doctors are able to pick out side effects of medications on the tests and don't always ask you to stop taking them, but if the side-effect they're talking about from the medication is an improvement of the symptom from taking the meds, it should not be discarded out of hand. I would strongly suggest if you remain with the same doctors, knuckling them down and ask them to explain fully and in no uncertain terms why they can't judge your gait because it's improved with medication. Be it MS, MD, or any other disorder out there it's no excuse.

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.

Thanks for the suggestion concerning muscular dystrophy. I'm pretty sure its not muscular dystrophy as too many symptoms weren't right. It did get me on the track of childhood diseases that affect the muscles.

From there, I realized there's a family history with previous generations likely having this and two members of the current generation. After some searching, I'm pretty sure I know what it is as I found a genetic disease that's more prevalent within my ethnicity and fits most of the symptoms. I plan to have myself screened for the gene to confirm. Will follow up later when I know more.