I've been posting my question on a couple MS boards hoping someone might have an answer, realized my best bet might be NeuroTalk since there are people here with more experience than just MS.

I really need some advice, as I can't continue suffering the way I have been. My symptoms started back in high school with muscle stiffness, headaches and blurry vision. The neurologist I was seeing said that I had TMJ pushing on nerves and my stiffness was unrelated and probably arthritis. The stiffness was dx'd as Ankylosing Spondylitis, but after several years with very little ankylosing, that was taken away.

In college I developed trouble walking about 50% of the time and was using a cane during the periods I couldn't walk well. I developed blurred and double vision during college as well. When I stopped breathing during surgery for hip impingement, I was diagnosed with Myasthenia Gravis. The orthopedic said he wouldn't do the other hip unless I saw significant benefit from the first surgery due to the complications. Unfortunately, I didn't really see any benefit, and ended up using a walker most of the time, with brief periods of being able to walk almost normal. I didn't respond well to the MG medications and they eventually did a thymectomy to see if that would improve the symptoms. The surgeon said my thymus gland looked abnormal, but not tumorous or anything that would have shown up on the CT scan.

As the muscle stiffness was becoming more severe, my current neuro dx'd me with Stiff Persons, but was never sure about it. One of her colleagues is positive that I do not have it. She sent me to Mayo for a third opinion and they said it was inconclusive. I have stiffness, but not what they expect in SPS and my antibody count is in the diabetes range, not the SPS range. They left the SPS dx, though, since they didn't have a baseline from before immunosuppressants and they said the benzos could be altering the way the stiffness presents. At the time I was have my gait was extremely stiff, but they said I hadn't adjusted to the benzos and did PT to teach me how to walk normally. My gait resolved for about a year.

In the last year, I've developed a range of new symptoms. My fatigue has turned into extreme sleepiness, my eyelids no longer open without extreme effort, I have periods where I'm unable to void my bladder (which I had before, but are more frequent), so I need to cath frequently, and developed mixed sleep apnea. Also in the last week i woke up and was unable to walk again. This time I'm not as stiff, however, and my gait appears more ataxic. The eyelid symptoms are helped by the amphetamine that my pulmonary doctor is prescribing for the sleepiness, but it was really luck that led me to that solution. I don't know if the walking problem is the same symptom or something new, as it resolved for nearly a year after I was put on benzos and did PT. Its worse than the previous episode, as I could use a walker fairly easily before, now I have trouble coordinating my movements even with the walker. My GP didn't know what to make of it and I haven't been able to talk to my neurologist, who must be out of town. At my last visit she didn't know what was causing the new symptoms, but said its not Myasthenia. Personally, I don't think I have SPS, but something else that has stiffness as a symptom. I'm working from home since I can't walk well enough to get into work, but can't keep this up indefinitely. Whenever I think this can't get worse, it does.

Does this sound like MS and if so, is there a doctor in the DC/Baltimore or Charlottesville/Richmond area I should see? Any help is appreciated.

Sorry to hear about all of your problems, but personally I wouldn't assume MS from your list of symptoms. That's just my opinion however and the disease can present in a whole host of ways, nothing is really typical.

That being said however, rather than having difficulty voiding a bladder, it is seen more in pts with ms to have difficulty not voiding their bladders. While stiffness can be a symptom it's 'generally' caused by spastic muscles that 'generally' causes weakness, tremors and uncontrolled movements. Eyelids 'tend' to twitch rather than being unable to open. And while fatigue can be a symptom of MS, it is also present in any number of disorders.

So again it's just my opinion, not a doctor and never played one on tv , but given the list symptoms and time it started, I personally would lean more towards MD (muscular dystrophy) rather than MS. MD like MS doesn't always have 'classic' or 'typical' symptoms. It's 'generally' thought to occur in childhood alone, but there are adults who present symptoms later, it's not as common, but does happen and unfortunately it can be a long time in arriving at the dx after reaching puberty due to this.

It would still be treated by a neuro, along with a host of other doctors, and the MDA has a quick search you can access to find an MDA clinic close to you, giving you all the specialists under one roof so to speak. If you're still leaning towards MS, the national MS Society also has a contact number so you can speak with someone who can not only listen to your concerns, but can help find a neuro in your area that specializes in ms.

I hope all the best for you. And am fighting my own 10 year+ quest for an answer over my body's personal civil war. It's hard, and frustrating, at times worrisome and heart rending, but keep up the fight! The answer is out there somewhere.

(Edit) looking over the variations, I think your dr might have been correct in removing MG from the diagnosis, but you might want to a look at FA and FSH/FSHD sorry I'm not more familiar with the variant forms )

Gosh it sounds like you have had a terrible time of it! So sorry that you have been through so much.

Have you had an MRI? That would be the first thing I would be asking for, to see whether you have brain/spinal lesions, as well as a referral to a Neurologist if you don't already have one.

I just hope you can get some answers to your questions.

Actually, its funny you should say that. The first symptoms that bothered me were in high school when I had headaches and heart issues. But when I was three, my parents wanted to enroll me in a gymnastics course and the instructor (an olympic gymnast from Iran) wouldn't take me until I was cleared by a specialist since he said I had unusual muscle stiffness. I did the gymnastics for ten years and quit when I was 13 because the muscle stiffness was interfering with the sport.

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

Because I had a Myasthenia diagnosis, they've done EMGs and eventually a thymectomy, but I thinks its been over 10 years since I've had neuroimmaging. My last blood test for Myasthenia was negative, so I'm hoping the thymectomy worked.

My current neurologist isn't quite sure what to do so I'm making an appointment for a second opinion.

The last week has been hellish. My legs have pretty much frozen up and collapsed at midpoint in my stride. It started last Friday morning. I went to my GP who didn't know what to do and my neuro didn't return my calls.

I even called the doctor I had consulted at Mayo clinic last year and told her whats going on. I got a call back and she informed me that she was revising my dx to Functional Neurological Syndrome (which is the new name for Conversion Disorder in the ICD), and wants me to come for a two week gait training program.

I finally forced myself to go swimming tonight and am very sore, but can walk normally now. I hope I don't freeze up again tonight. I don't know if whats going on is rheumatological or neurological, but I'm pretty sure now that I don't need gait training, I need to know why my muscles or joints are freezing up. Plus it was pretty distressing to have a doctor who hasn't seen you in a year tell you that you have Conversion Disorder and that basically nothing is wrong with you, after you've been struggling to walk and stumbling for a week.

I'm not sure why my GP or another doctor didn't suggest swimming to loosen up my joints, but someone on another forum told me to try it and it really helped.

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.