What is this? Can Myanthenia start in Legs?
 

Hello,
I have been avoiding forums and counting on the medical system, but in Canada, it takes so long to get results, and appointments.
I have been sick for 1 year now and have only decided to seek help from a neurologist in January. My Grandfather had Myasthenia, and I'm just not sure if this is what’s going on with me or if could be something more simple.
Last March I began having dizziness, that progressed over months until the end of November, when I began having trouble walking. I walked VERY slow, sometimes coming to a stop. I finally went to neuro and they discovered weakness in my legs and arms. My Leg weakness is almost my constant companion. It increases and decreases in severity, sometime is goes away all together. I find walking distance (walking to work in the morning) very difficult, I get weaker as I walk. My knees bending further and further as I walk….people stare…I was a runner, running 25km per week. Now I cannot walk around Wal-Mart without a cane. My arms do not bother me to much. My MRI came back Negative. I was clinically tested for Myasthenia, looking up at my neuros finger, testing my smile. I have NO head or neck, eye or swallowing, or chewing difficulties. My Neck is strong. Has anyone’s Myasthenia started out like this? Getting out of a sitting position is hard. I even feel as though my Core (torso) is very weak, when I have bad spells, my core contracts downwards, almost in a bending over motion. At night I am having difficulty breathing, taking very deep breaths ( is that what difficulty breathing feels like). It’s keeping me awake. I am 107lb, and was ALWAYS very healthy. I’m scared when I go back to the neuro he is going to send me to a physiologist. My symptoms’ are weird, on and off and are ruining my life. I’m too young to be sick. I want to go back to running. Any incite, with your experience would be wonderful.
Thank-you

Hi, and welcome to this forum. Please don't hesitate to ask questions.

Your symptoms sound consistent with myasthenia gravis to me. Sometimes it's called the "snowflake disease" because it affects different people so differently. There are muscles groups that are more common than others for the first symptoms, but it can start anywhere. The fact that some of your muscles (like your neck) don't seem to be affected doesn't rule out myasthenia.

Your doctor did a clinical exam on you, but you should have lab tests, too! There are blood tests for myasthenia gravis. If they come back positive, you definitely have it. If they come back negative, you need further testing. You should have a single fiber EMG, which tests the function of the neuro-muscular junctions. Not every neurologist can perform this test--you'll need to be sent to one who specializes in neuro-muscular diseases.

Please be very careful. Myasthenia gravis (which you may or may not have) can get worse really fast, especially after some physical stress (especially an illness like the flu) or emotional stress, or often for no apparent reason. If it starts getting worse fast, that's a medical emergency. If you're struggling to breathe or suddenly having trouble swallowing, get to the emergency room or call an ambulance.

The hallmark of myasthenia gravis (I mean the feature that distinguishes it from many other diseases) is that it's fatiguable. That means that it gets worse the more you use your muscles, and better after you rest. In addition to that, it's typical of myasthenia for the symptoms to come and go, and get better and worse over days or weeks.

For what it's worth, the way you describe your walking is very familiar to me! I walk like that sometimes. In addition, I have muscles that don't seem to be affected, or at least not much, or only for brief times before they get better. Right now I'm having no trouble with my vision, my eyelids, my chewing, my swallowing, and my breathing. My first symptom was trouble with the muscles that keep me vertical from the waist up, so I was swaying back and forth as I walked. My neurologists were very puzzled by this, and it took a long time to get me a diagnosis. As my disease progressed, my symptoms became more typical.

I hope you get answers and treatment soon. There are a lot of treatments for MG.

Abby

Thank-you
 

Wow Thank you Abby, your response was very comforting. I have felt very alone dealing with this. It's so hard to explain and the variability day to day is hard; even the variability from minute to minute. I am very affected by emotional stress, and it's been so cold here, so I think that's not been helping. It gets bad very quickly with stress. I also have the torso and swaying. That's where I first noticed something odd after my legs. Well I have not been confirmed and it's not for certain that this is what it is,It's just comforting to have someone understand what I’m going through (with weakness)
Thank-you, you have no idea how much I appreciated your response.

-S

Oh, I completely understand how you feel! I went for 15 months without a diagnosis, and that was the hardest part. I worried people would think I was faking or imagining or somehow emotionally generating my symptoms. I worried that my doctors, who couldn't find anything wrong with me for a long time, would tell me my problem was psychological. I felt guilty about hoping for a diagnosis, since you're not supposed to want to be sick. But for me, the not knowing was really hard to take.

Yesterday I had a routine visit to my neurologist. My symptoms are so variable that he has never seen me more than mildly weak before. I got really weak sitting in the waiting room, and when he called me to the exam room, I tried to stand up and ended up slowly sinking to the floor (into a squat). I struggled in, with the help of my husband. He talked to me for about half an hour. By the end of the visit I was much stronger. He tested my leg strength and I was pretty much normal. Luckily, he knows about MG or else what would he think? Half an hour ago I couldn't stand or walk, and now my leg strength is normal. The same thing happened to me long before I got diagnosed, during an ER visit.

Take care of yourself, especially if you get a cold or sore throat. Journal, if you can--write down your symptoms every day and their severity, and anything that might have set them off (what you ate, how you slept, if you're sick, if you're under stress, what activities you did, the weather--anything you can think of). Even before you get a diagnosis, finding patterns will help you learn to manage what's going on, or at least what to expect. That takes some of the anxiety out of it. Hang in there. Ask questions. We're rooting for you.

Abby

Thanks
 

Wow Abby!!!
I starting the slowly sinking to the floor just this week. It's been only a 3 month progression for me with these symptoms end of Nov-now. I thought I was crazy, sometime I am like, am I making this up? because it's so weird, and I was always so healthy. I read about people just dropping to the floor. That doesn't happen to me, it's a slowly sinking until i'm in a squat and on the floor. In a way it's good so I don't crash on the ice outside and hurt myself.
I am going to take your advice and start to write everything down. Then at least the neuro will have something to go on and he can figure out whats wrong, even if it is not this disease.
Thanks Again.

-S

That's exactly it! I sink very gracefully to a squatting position. It looks like I'm doing it on purpose. I end up on the floor a lot, sometimes many times in a day (a bad day), but in the two and a half years I've had this disease, I've never actually fallen (though I've crashed into a lot of walls and such).

Re: journaling: I thought that I was paying good attention to triggers and such, and that writing everything down wouldn't reveal anything new. One of the things I did was give a rating on a scale of one to ten of how much physical activity I'd done that day, and a rating on a scale of one to ten of how bad my symptoms were in general. Then I made a line graph (OK, I'm sort of a geek. I really like graphs). Wow, was that ever eye-opening! There was a very strong correlation between the how bad my symptoms were and how much physical stuff I'd done in the previous two days. Way more than I'd realized.

If you are having female cycles (I'm guessing you're a woman only because you mentioned you're 107 pounds), write that down in your journal, too. Many people with myasthenia (and maybe other neuromuscular diseases--I don't really know) notice that hormonal changes are a big trigger. They are for me. Two days before the end of each cycle, I tend to get much worse for a few days.

Abby

Thanks
 

Yes, Abby, I am Female. I have been really bad, and my "monthly friend" left on saturday. I started getting very ill Wednesday-Friday night and was particularly bad Sunday (danced in the kitchen on saturday night with some friends of mine, for 20mins,... girls night) and paid for it sunday and monday, and today I am starting to feel better.

Hi Segardin and welcome to this forum!
I started my MG 5 years ago with progressively all symptoms above the waist, but nothing in the legs. After 6 months of treatment, everything went back to almost normal except that my legs started weaking and I'm still at that point now...
I agree with Abby's statements about tests and neuro's who are capable of dealing with MG, try to find one!
I would advise you to be careful with drugs and medications, some can really worsen your symptoms , see for example:
http://dig.pharm.uic.edu/faq/myasthenia.aspx
Maurice.

Today
 

Most of what I read and what I have learned from my grandfather is that is usually does start in the head and neck. He did not progress to general weakness, however, he was in his late 70's when he showed signs.
Perhaps I am dealing with another type of disease all together. I am completely fine today (it's only 11:00), However, its all just so odd.....

I also keep thinking (because of the dizziness) if inner ear infection can cause severe weakness in my legs.

I think that if it is Myasthenia, it will show itself in due time... i just have to be patient.

-S

try asking about LEMS
 

hi I don't know how to use this , but your symtoms are identical to mine.I was diagnosed with lambert-eaton myasthenic syndrome two years ago.I have had alot of success useing diaminopyridine(DAP) good luck

Can this spontaneously go away?
 

Thanks so much, I'm going back to my Neuro Friday. I have been very ill the last few weeks. Hardly able to walk at all some days. Still no symptoms in my face or neck. I caught a cold that kept coming back, and my symptoms came with it. I also fell going up the stairs and my shins are all bruised. Everything went away today at 10 o'clock... just all of a sudden... so weird. I feel great right now.
Does that happen to anyone.. does it go away all of a sudden?? How do you know if your symptoms are leaving? ????

This is what happens to me
I felt the weakness going in and out. Today it was while i was actually walking... What happens is that it alternates every so many steps with;very difficult to walk and then I can walk fine, and another few steps, difficult to walk again, then fine. I got to my office sat down to do some work and the next time I got up all my symptoms were gone... just like that... after 3 days of VERY bad weakness.

I'm thinking my weakness is in my hips... the sad thing is, I know it will be back in a few days to a week. It never stays away for long. Like I said "my constant companion"

I don't know what to think. That is pretty weird, how it comes and goes so quickly. I definitely feel my weakness coming and going, but my "spells" of weakness last much longer--usually about 45 minutes. My weakness never goes away suddenly, but gradually fades out.

What you're experiencing is unusual, which may be a good thing--it may be a very useful clue to your neurologist. Please let us know how the visit goes.

Abby

thanks abby
 

Hi Abby! Thanks for replying!
What I meant to say is that my spells of weakness can last for days or weeks at a time. I have periods of intense weakness that probably last 1-2 hours within those days of mild to moderate weakness. But, when my weakness is fading away after it has been around for a few days, a week or more, that's when I start feeling like:
I can walk normal , then I can't (very weak), then I can again.

The weakness doesn't fade out gradually all the time... Does that make sense? It goes in and out until it's gone. Sometimes over the span of an a 1/2 hour and its totally gone.... Mine usually doesn't creep out, over days.

I have been doing research and I can't seem to find any articles which talk about how the symptoms leave, just how they can begin. They begin sometimes suddenly or gradually. So, I was just wondering how a person with MG knows the symptoms are leaving and what the timeline is from when you know the weakness is leaving until you are feeling 'normal' again. And how does it present ? Does it leave gradually or is it very sporadic (in and out), like me?

I hope this makes sense..

yes it can,
 

go away spontaneously.

It is not common but does happen.

I hope your "constant companion" has left you forever.

I think I understand you. I haven't experienced the "in and out" thing that you describe, or at least not in such an extreme way. I hope they do check you for LEMS, which is a myasthenic syndrome (also autoimmune) that sometimes acts a little different from "typical" (I put that in quotes, because I'm not sure there is such a thing) MG. Sometimes (but not always) people with LEMS are very weak and get stronger when they use the weak muscles.

I don't know if it will be useful, but here's my experience. I have ups and downs that come on gradually and leave gradually over a period of a couple of weeks (except that certain things make me worse all of a sudden, hormonal changes in my monthly cycle and infections like a bad cold). In addition to that, I get gradually and steadily weaker during the day, so that I'm weakest at night. In addition to that, I have spells of intense weakness, usually in the late afternoon or early evening, or late at night before bed, that last about 45 minutes. They come on quite suddenly but go away gradually.

I had a bad spell last night around dinner time. I was sitting at the table and suddenly realized I was "getting weak" (my husband knows what I mean by that--it means it's coming on quickly). My neck and sides were really too weak to hold me up, so I had my husband help me lie down on the floor. After twenty minutes or so, he dragged/carried me to the couch, where I lay for another half hour before I could walk. For the rest of the evening I needed help on and off getting around. I understand that this is different from what you describe, but maybe parts of it will be familiar.

But here's the thing: don't be quick to believe a doctor who tells you "it's not MG, because MG never does [whatever]." MG is a really quirky disease. I once had a neurologist tell me "I have seen about 800 patients with myasthenia gravis in my career, and not one of them walked like you do." Then he diagnosed me with myasthenia gravis. Smart doctor.

At the time, my main symptom was some sort of truncal instability, so that I swayed wildly to the left and right as I walked. I still do that a bit, but now (it's been two and a half years) I have other more typical MG symptoms. So the picture I present now isn't as weird as it was when I had that one weird thing that was over-whelming everything else.

So tell the doctor about the sudden changes, but don't forget to tell him about milder symptoms, too. Tell him things like that it's often hard to stand up from sitting down.

One more thing: sometimes I "fall off my hips"--I suddenly fall forward, but only from the waist up. Then I stand up straight again and continue on my way--carefully, because if I balance myself and don't make any sudden moves, it's less likely to happen. It's as if the muscle systems that catch you when something throws you off balance aren't working properly. Similarly, when I'm so weak that I need help walking (my husband is standing behind me holding me up), if I step on a sock the kids left on the floor, or if he bumps his feet into mine--any little thing--I lose the partial ability to hold myself up at all. At this point, I sometimes knock him, down, too.

Abby

Yes!
 

Thats a really good point about the milder stuff. going up stairs or getting off the couch. I wrote it all down in the diary you told me about. I also have my questions written down. Mom and dad will also have questions. Thanks so much!

S, Have you had a brain MRI? Have you been checked out by a cardiologist? Any ECG's of your heart recently?

It might be MG but don't rule out other possibilities. Guillain-Barre begins in the legs.

When I had an undiagnosed B12 deficiency, I had symptoms of weakness like you describe but it was usually after doing an activity. For example, I walked down a couple flights of stairs and almost couldn't walk afterwards. I sat for 20 minutes and was then better.

My B12 deficiency was making me tired but it was my undiagnosed MG making me weak. Though a B12 def. can make MG worse because you need B12 to make acetylcholine (ah-seat-ill-co-lean) in the body.

So MG weakness can come and go quickly if you are not in a generalized state yet.

Has your internist/primary doctor run some basic tests like a CBC (anemia), thyroid, B12 or other things that could cause weakness? They can also do an ECG of your heart. Heart problems can cause weakness.

If you get to the point where you can't move, breathe well or can't swallow, that's the time to get yourself to the ER. Don't drive! If you have MG, that's the point where it's an emergency. It doesn't matter if you haven't been diagnosed yet. At that point, you need care.

Your situation reminds me of the old story about the frog in boiling water. If you drop a frog in boiling water, it will try to jump out quickly. So would I. ;) If you put the frog in lukewarm water and then slowly bring it to a boil, it gets "used to" the warmth and boils to death. Gross but a useful way to think about MG weakness.

If you use your right arm drying your hair, you may not notice the weakness right away. A couple hours later, all of a sudden your right arm is weak. You might think it's "all of a sudden" when the activity that began the reduction of the acetylcholine in your arm started two hours ago. You simply "ran out" of it at that one moment in time.

You may be in an MG stage where you recover more quickly than, say, I do. Some MGers recover quickly while others take longer. Or it takes more drugs. It is not a predictable disease and how it presents and progresses is different for everyone.

I've had MG my entire life (diagnosed at age 41). When I was younger, I adapted by not doing as much physically. It wasn't until about age 39 that I began not to "bounce back" as quickly as I used to. And now I get weaker more quickly and need more time to recover. That's one reason why I didn't respond sooner. I knew I'd have to type more than usual and I wasn't up for it!

Does that help explain MG? Crap, even after having it for years, it is not easy to cope with.

I hope you get some answers soon. Keep asking questions and don't assume anything. Trust your instincts. And just because a doctor doesn't know what's wrong doesn't mean something isn't.

Annie

Wow!
 

Wow Anne! yes it does!

I have gone to an ENT, Cardiologist and now I'm seeing Neuro. My neuro said at my last vist that he couldn't tell for sure if it was neurologic or not. I have had a full work up, Thyroid, b12, Glucose, iron, potassium, ANA, Inflammatory markers, I could go on forever, the list was so long. These were normal. I have had a MRI of my Brain and cervical and thorasic spine. These were normal. I do feel like I have tinnitus, I have told my dr that. I have some balance issues, and sometimes a short ring in my ear. Today I'm going to ask him if that could be causing the weakness in my legs and arms. I'm wondering if I have a sever viral infection or something.

What ever is affecting me is doing a job on my hips.
On the straight leg raise test, i can lift my leg, it sinks slowly, next time I lift it , it drops more quickly the 3rd time i may not be able to lift it more then an inch off the table. It seems very fatigable.

I'm just very young, I was a runner, 25km per week, 23 min 5 km race. I was fast, and I just want to get back to doing what I love!

Thanks for your info, and answering my questions.
I'm a educator at the university here, so i'm good at looking up and researching, however, you can't get a personal experience from the literature. Hence, why these explanations are so important.

Thanks again,
-S