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

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..

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

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 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