Today my neurologist saw me in the middle of a spell of intense weakness. I get these usually towards the end of the day on days when my MG symptoms are especially bad. They're just like regular MG, except more intense. They last about half an hour. I can feel them coming on, and I can feel them subsiding. When they're over, I'm still weak, but not so bad that I can't stand up or hold up my head, etc. Today, my neuro called me in from the waiting room just as the spell was starting to subside. I couldn't walk in (fell when I tried to stand up). But after he was done seeing me, I could walk out with the help of my rollator.

My neurologist thought this was weird. He said he hadn't seen it in myasthenia before.

I believe that I have MG, and I don't think that these spells are a completely separate thing. They come and go with the MG--I have them when my MG is bad, and stop getting them at times when my MG is better. I've asked this before, but I'd like to ask again: do any of you experience short spells of intense weakness, against a background of more moderate weakness?

I have looked into the various forms of periodic paralysis, and they don't fit. (It's a dominant genetic trait, and my parents and seven siblings don't have it; I'm way too old for the onset; I'm not fine in between episodes; I'm not worse in the morning; they're not triggered by meals or hunger or salt or potassium foods or by rest after exercise; and they never last 3 hours.)

It was a good visit, by the way. It was the first time my neuro has seen me more than mildly weak. He has been great about taking my descriptions seriously, but I was glad he witnessed it. We're upping my Imuran, and I'm going to get a 5-day course of IVIg with the possibility of boosters later on.

Abby

Yep, I've had them -- but, I'm not sure what brought them on. Well, a couple of times I had them during walks -- but, I was "conditioned" and had walked that amount BEFORE without any problem. So, I don't know WHY on a particular day and time I suddenly had a problem. My "spells" seem to last less than 15 minutes -- and they usually seem to involve my breathing as well. I mean I am UBER aware of my breathing during these times. I have found it best just to STOP, become completely motionless, even close my eyes if possible, and concentrate on breathing. I usually just lie on the floor. The weakness seems to lift as it came -- BAM!! Suddenly I'm ok. (But, tired for the rest of the day.) Strange, huh?

It happened one time at my docs -- and the nurse couldn't find a pulse (I have low BP, anyway). I got rather WOOZY that time -- but, I didn't lay down like I normally would. My doc checked me for POTS -- but, I was ok. (I've worn a Holter monitor and had EKGs -- nothing wrong with my heart.) Just another mysterious day in the life of MG.

Abby, Within the few months before my MG crisis, I had episodes like what you're describing. The worst one came just a day before it when I thought I would stop breathing altogether. It could simply be that your MG is being pushed to its limits. There could be some other factor but you should see it as a warning sign to SLOW DOWN.

There are a LOT of articles about NMJ fatigue. Here are a few for you.

I hope the increased treatment helps. Hang in there and take it easier.

Annie


The best one, which has a free PDF:

http://physrev.physiology.org/content/88/1/287.long

Another PDF, which is more about general fatigue:

http://www.cfids-cab.org/cfs-inform/...ri.behan04.pdf

Other articles:

http://www.ncbi.nlm.nih.gov/pubmed/8585479

http://www.ncbi.nlm.nih.gov/pubmed/11461153

Thanks, Annie. It definitely happens worse and more often when my MG is getting worse. Today's was a little scary. But I have never had breathing problems with this. I do take it as a sign that things are tanking in general, and I would have called my doctor if I hadn't had an appointment with him already.

Abby

Abby, I have similar short lasting weak spells and have had them since I developed MG.

I haven't had them for a few months now, but my experience sounds like the same as yours.

I can usually feel them coming on, I get tingly sensations in my arms, legs and face, as if I can feel the antibodies going outward from my chest...and I always know what it means, that I'd better find a comfortable place to rest quickly. Mine are usually triggered by stress or pushing myself too much. They go away in 30 minutes to an hour (I haven't actually timed it) after resting. I am left with a residual weakness afterwards, but at least after resting I can move around again.

Before I learned to recognize the signs (and possibly, this event happened much faster because was in worse shape, I'm doing better now) I spent a lot of time on the floor waiting for this sudden weakness to go away.

You aren't alone in this.

Take care of yourself.

Thanks, DesertFlower and Jana. That's reassuring to me. You know I have never really stopped questioning my diagnosis, and my doctor set me off again today by telling me he hadn't see that with MG before.

Abby

This was describe by Marry Walker (the woman physician who discovered neostigmine/mestinon). In fact from this clinical observation she concluded that "the paralysis in myasthenia must be due to a positive toxic substance produced in the course of muscular activity"

Surprisingly, modern MG experts (including those considered leaders in the field) are not aware of this, and have never seen this before. Or possibly they did, and just called it "collapse like episodes" as a result of some ill-defined emotional problems. (like one leading expert I have encountered).

To me this means that your MG is taking its natural course and is not under good control , so you need more aggressive treatment.

Also, make sure they check the levels of potassium. Low levels of potassium are easy to correct, and can lead to worsening of MG.

Wow, thanks so much. Look what I found:
http://www.medpagetoday.com/Infectio...Vaccines/31235

The body's circadian clock times the immune response. My clock seems to be about an hour ahead of those mice's, because theirs peaks at 7:00, and I typically get what feels like "surges of antibodies" at around 5:00 or 6:00.

This article even says that it's known that rheumatoid arthritis is worse at certain times of the day, and now we know why.

It's so helpful to me just to know that the immune response goes up and down during the course of the day, because that's sure what it feels like!

Yes, my MG is definitely worse these days. My neuro is increasing my Imuran and I'm going to have a course of IVIg--with the possibility of a booster or maintenance dose before things get this bad again. We talked about steroids, but I don't want to try them until I'm sure these other things won't work, and he thought that was sensible.

Abby

Abby, are you SURE you aren't having breathing "issues" with these weak episodes? I had bad asthma as a child. It seemed to disappear until I was about college age. When it AGAIN reared its ugly head, I didn't realize WHAT it was. I didn't know I was having trouble breathing -- I just knew that I felt BAD! It took an astute pediatrician and his trusty stethescope to tell me I was wheezing. Epinephrine in his office (hate this stuff) followed QUICKLY!!

So, I would ask YOU -- are you having any OTHER signs of breathing difficulties during these episodes -- such as the ones that Susan mentioned -- like tingly sensations -- or MY "favorite", a POUNDING heart???

BTW, I don't "blame" my neuros for not catching this kinda stuff (periodic weakness). I believe that neuros have FAR more illnesses/disorders to keep track of than OTHER specialties. It seems to me that they should "split" the specialty. I know that they often DO on their own -- like some only do migraines, some do neuro-muscular, some do strokes, some do traumatic brain injuries, etc. But, it would be NICE if the AMA would "recognize" the NEED for a REAL division in the specialties. (As far as I know, there is only one board certification.) Oh well, me just trying to "run" things again. Typical "type A" -- LOL!!!

Jana, those are excellent questions. A pounding heart, wooziness, tingling, or increased respiratory rate--those would indicate trouble breathing. Nope, I don't have those. It's weird how MG affects some muscles and leaves others alone, and how wildly this varies from patient to patient, and even in the same patient.

The first symptom of MG that I noticed (as in Something Is Wrong With Me!) was one of these spells. I collapsed slowly to the floor. I didn't know how to interpret what had happened. I thought I must have fainted, though I had no feelings of dizziness or loss of consciousness. I couldn't even explain to the doctor what had happened--our best guess was some inner ear thing that messed up my balance. I think that the reason I had so much trouble understanding what I had experienced is that the only other times I've experienced weakness, it was in concert with something that made me dizzy or short of breath, like a fever. My normal MG weakness doesn't feel like anything, so that sometimes I don't realize I'm weak until I stand up and find myself back in the chair. But during these intense spells, or when I'm generally worse, I feel a sensation of weakness in my limbs even when I'm not using them. I'm not sure how else to describe it. This is my warning sign.

Thanks to you and the others for discussing this with me. This is a big help to me. Writing about it helps me understand what I'm experiencing and makes it less scary. It's strange that we should have to think about our experiences in order to know what we experienced, but it seems to be so.

Abby