anacrusis - you say altitude, which is really interesting.. I have only been at high altitude once since my symptoms really got bad.. .. It was hot too, so I chalked it up to that.. but I almost got stuck walking in a square in Boulder since my hips just wouldn't work anymore! it was bad! The whole trip I was so weak!

And, if I think back since my 20's when I was hiking in altitude I could barely put one foot in front of the other, but I always thought I was just simply altitude intolerant! :0

Abby, Anything that upsets the balance of the immune system is a potential "trigger" for an autoimmune disease, as you know. And if your "balance" is less than normal to begin with, you're more susceptible to whatever that is.

With things like the flu, if you have mounted antibodies against it through the years - depending upon what strain you come in contact with - you will have a better immunity against it, even with MG.

I've said this before but it bears repeating given what you guys are talking about. Extremes of heat and cold increase the amount of Acetylcholinesterase (AChE) in your body. It's an enzyme whose job it is to "mop up" what's left of Acetylcholine (ACh) when it's done with it's job of making muscles strong.

Mestinon is a cholinesterase inhibitor. So are caffeine and nightshade foods (potato, tomato, peppers, eggplant, tobacco). So they all, to varying degrees, block AChE from doing it's job so that we can use what ACh we do have for a longer period of time.

Kathie, MG and MS are completely different autoimmune animals. ;) Their nerve "condoms" - sheaths - become damaged, thereby causing pain. Cold will dull pain. Too much cold and you can have cold-induced injury though and any good neurologist is cognizant of that. Their weakness is caused by nerve damage and not by a lack of acetylcholine. Teething babies are given something cold to suck on to reduce the pain. Same principle.

Which makes me wonder, Abby, if you don't have some other "subtype" of MG that has more to do with channels or some other NMJ issue since you don't get worse in hot or cold weather.

The reason I talk about meditation so often is that stress is horrible for the body. It's just that we who have MG notice it more quickly. Someone without MG doesn't realize how talking stresses the body but MGers notice more quickly how it can tank a LOT of muscle groups at once. It can leave you open for more generalized weakness and not just certain muscle groups. For example, you can cut a lot of veggies for soup and then your arm/shoulder/hand can be weak right away or for days but your legs and other muscles might be okay. If your MG is not doing well overall, it might be too much of an activity and tank your MG in a more generalized way. Then you either need more rest or more treatments.

It's a tightrope walk between enough drugs and too much activity to keep MG balanced.

I suppose you can think of every little "stressor" or "trigger" as adding weight onto you, as if you're floating in MG water. The stronger the weight or the higher number of them and the worse you get; literally drowning in MG.

Your "sensitivity" to a trigger may not do a thing to someone else with MG. The most important thing is to know what triggers YOUR MG. And then to lessen those triggers as much as possible. :cool:

Annie

Annie,

Thinking more about heat and cold--I don't have air conditioning. I also spent a lot of time at the beach, cooking in the sun, last summer. Getting very hot doesn't trigger weakness. And, in the winter my house is very cold. We have a huge house, and the only heat is a wood stove. When it gets really cold, I sit close to it and sometimes overheat. I don't notice any fluctuations in my symptoms according to temperature changes.

I also have almost no eye symptoms. I'm AChR seronegative times 3, and seronegative for MuSK and LEMS. My first two SFEMG's were inconclusive.

I'm just wondering if these atypical things about my MG add up to anything in your mind. :)

Oh, one more thing: I invariably come out of movie theaters very, very weak. Church, too. So while usually my MG is typically fatiguable, sitting still for long periods of time seems to set it off, too. On the other hand, I don't notice that sitting at my computer at home for long periods of time makes me weak. And I typically feel strong when I get up in the morning.

Abby

Oh, and for anyone interested in my puzzle, add this: Mestinon doesn't help me at all.

Abby

Abby,
Are you sure it's MG and not something else?

Annie
 

Annie, can you elaborate on this? Talking absolutely exhausts me to the point where I prefer to avoid it at all costs. I'd like to understand this better:

"Someone without MG doesn't realize how talking stresses the body but MGers notice more quickly how it can tank a LOT of muscle groups at once. It can leave you open for more generalized weakness and not just certain muscle groups. "

Thanks!

Tracy,

First of all, how are you? You are dealing with chronic Lyme as well as MG, right? I saw in another post you said you'd been in the hospital, but I wasn't sure if you meant recently, or if you were telling about a past episode.

I'm being treated for MG with Imuran. I'm sure enough that I have MG to continue to take the drug. But I'm not 100% sure. I like to continue to explore other possibilities, but only in ways that don't disrupt my treatment.

I'm looking into the possibility of CMS, though it would be unusual (but not unheard of! Exhibit A: Mike (pingpongman) and his relatives) for someone to have no symptoms until age 43.

I continue to consider the possibility of hypo- or hyperkalemic periodic paralysis, since I have "spells" of intense weakness in addition to my more typical MG symptoms. I'm trying to find a correlation between what and when I eat and these spells.

Those are the only other conditions on my mind right now. I have no pain and no muscle stiffness and no twitching. I'm not worse than I was three years ago, when all this started. My symptoms are very variable, hour by hour, day by day, week by week and month by month. These characteristics rule out a lot of other diseases.

Of course, I'd be interested in any other ideas that pop into your head.

Abby

It sounds pretty confusing. My symptoms vary like yours do and are unpredictable which is very frustrating.

Yes I have Chronic Lyme as well. I just got out of the hospital after a 9 day admission for crisis two days ago. I'm pretty miserable right now.