15 years of suffering...is this MS?
 

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 :o, 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! :eek: 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.

:hug:

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 :D 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 :hug:

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.

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.