out to pasture

[Stellatum]

Originally Posted by Brennan068

What PT does for us is prevents muscles from atrophying. You're right, there' no PT for the root cause; but by keeping muscles "strong" they're there to listen when the commands get through.

That said, PT is a personal choice and if you're going to use all your spoons up for the day just getting to the facility it won't be helping you.

Right. That makes good sense to me. I don't know if this is typical of MGers, but my symptoms are so dramatically variable, from hour to hour, day to day, and week to week, that I'm often able to walk. I zip up and down the stairs all day, but then at night, I sometimes have to be lifted up one stair at a time. I played Frisbee in the park the other day, and then had to be wheeled to the car on my walker. I went out shopping yesterday without my walker--taking advantage of a good day--and you wouldn't have known by looking at me that there was anything wrong at all. Sometimes I walk fine into Church but need to be practically carried out (my little son says, "Mama, you can use my soldiers, I mean my shoulders"). So I don't think I'm terribly deconditioned. For someone whose symptoms are worse than mine, and more constant, I'd think physical therapy might be worth "using up all your spoons."

Thanks for helping me think this out. I find this sort of conversation to be extremely useful to me--it helps me get a grip on things, and then I feel more in control of my decisions.

Abby

[Geode]

I would also like to know if the type of extreme fluctuation Abby is experiencing is typical of MG.

Abby, your descriptions sound so much like the fluctuations I have. Sometimes I can go 30 minutes on the treadmill without incident, then other times I have had to step aside at Walmart because I'm failing to propel myself forward and am being tailgated by a 90-year-old woman with a walker.

Abby, I do own a wheelchair, and it is one of the best investments we ever made. I push it when I don't need it, and let my companions push me when I do. We found one that is not a transport chair (it has large rear wheels, so I can maneuver myself in the chair if I want/need to) but it has taller push handles like a transport chair, so it's much easier on my husband who has ankylosing spondylitis.

[bu452000]

Hi Abby,
Sometimes with me the stress of driving is worse than any amount of exercise bringing out the MG. My symptoms are not as severe was yours but I do feel that what ever exercise you can get is of benefit to keep you muscle and muscle tone. I am still able to go to the gym a few times a week but if I do too much I start to have problems. All in all I do feel it's beneficial to get what ever exercise I can to stay healthy. My way of fighting back against this mystery of a disease. There seems to be such a variety of ways that MG affects us and a variety of ways the meds affect us. Just remember to fight back and always do as much as you can in spite of the MG.
Al

[Stellatum]

Originally Posted by Geode

I would also like to know if the type of extreme fluctuation Abby is experiencing is typical of MG.

Tatia, I think of you often. I've seen your video documentation of your episodes. Mine are not nearly that extreme, but I do have 45-minute "spells." Usually I can feel them coming on. In the middle of a severe one, I can't walk or stand, and sometimes I can't even sit in a kitchen chair (I need to lean).

But these "spells" happen against a background of more typical MG-like symptoms. On a typical day, I feel like I have MG all day long. On a good day, I might feel almost normal at any given moment, but if I do anything with my muscles (even like blow-drying my hair) they fatigue, and by the end of the day it's worse.

I have tried to correlate my spells with what and when I eat, but food seems to have nothing to do with it.

Bottom line: my weak spells are not usually anywhere as severe as yours. And I could never go 30 minutes on a treadmill even on my strongest days. I know you are familiar with the different kinds of periodic paralysis, and I know you've even had some testing for them--but I don't understand why one of those diagnoses isn't more of a possibility for you.

Thanks for the input about the wheelchair. My husband has put foot rests onto my walker (yes, against the sensible and kind advice of 4-eyes!). This makes sense for me, because I need to be pushed in it very rarely, and then it's only for, you know, 20 or 30 feet. For me, it's a choice between using a walker as a wheelchair, or a wheelchair as a walker. And since 95% of the time it's a walker I need, I choose the walker. I also have my rickshaw for longer walks, which is more comfortable than a wheelchair because it's made of a reclining lawn chair, so I don't have to hold my upper body vertical. You have to understand that my husband and I are dyed-in-the-wool jimmy-riggers. This is how we live. A walker rigged to serve as a wheelchair if I get caught weak and away from the car might sound like it's not ideal, but for us it's sort of a way of life. Think of it as cultural.

Abby

[Geode]

Abby I'm grinning because it's SO human nature to compare ourselves to each other and try to see how we fit in. And it's nearly impossible! We're so similar yet so different.

You say your spells are not as bad as mine, but when I read your posts I think you're worse, because there's only been 2 occasions on which I was unable to stand up.

And then you say you couldn't ever, even on a good day, go 30 minutes on a treadmill (which BTW is a rare occasion for me, but it does happen.) But I read your post and think there's absolutely no way, not even on a good day, that I could go up and down stairs. Most days I have trouble even walking up an incline such as a wheelchair ramp, even when I'm doing well.

Tatia

[Stellatum]

I know! Somehow it would just seem so comforting to know that there's something "normal" about this weird disease, even if it was just "normal for me and one other person." I'm sort of diagnosed, but I'm seronegative and had questionable SFEMG's. So in the back of my mind, I'm always wondering if I really have MG.

Not only am I up and down the stairs all day, but I really zip up them. Except at night. Then my husband looks at the living-room ceiling and thinks about rigging up a block-and-tackle elevator. I say, "There goes whatever small resale value this house had..." It's already too weird for anyone to want. The kids' rooms have reading lofts, reachable only by ladder (and not at all by me. Has anyone tried to climb a ladder since coming down with this disease?!?).

The differences we describe are at least partially due to different muscles being affected. The other day I had to have my husband physically lift my foot onto the running board so I could get into the van. But once my foot was up there, I could lift the rest of my body. Apparently, those two actions use different muscles. And recently I've had trouble learning forward when I'm leaning back on the couch. That's new. You never realize which muscles you're using until you can't use them.

Abby

[Brennan068]

Originally Posted by Stellatum

Has anyone tried to climb a ladder since coming down with this disease?!?

I was up & down ladders a lot Saturday afternoon... checking the gutters & cleaning the siding, but wow I was beat afterwards. I had planned on liming the yard but no hope of that all weekend.

I do notice different muscles react differently at different times. No idea what the connecting factor is, but I do notice it.

[Stellatum]

Originally Posted by Brennan068

I do notice different muscles react differently at different times. No idea what the connecting factor is, but I do notice it.

I know that I've read that it's normal (I love using that word) for MG for the weakness to travel around. For a month my fingers were weak, and I had trouble holding a coffee mug. Now they're fine. For the first year of my illness, it was my side muscles that were the weakest--now I don't tilt from side to side like I used to when I walk, but I do sometimes tilt forward.

Abby

[alice md]

Originally Posted by violet4941

Alice, what nutritional supplements do you use?

I apologize for the time it took me to reply. I somehow missed your post.

I take Co-enzyme Q10 and Carnitine and also made some (fairly minor) changes to my diet.

I have MuSK MG and some recent studies suggested that there are mitochondrial abnormalities in this disease.

Incidentally, I have been interested in the role of mitochondrial abnormalities with regards to diseases in my field of practice.

So, when I discussed this with my neurologist, he agreed that it may be a good idea to try those supplements.

Since I started taking them (about three months ago) I see mild, slow, but steady improvement. I have had better periods in the past, so I am cautious in saying that this is the cause, but I do think (and hope) that this is beyond just having a better period.

[alice md]

Re: the wheelchair: I talked to my husband about it and found out some things I didn't know about how he feels about my illness. I guess I thought he was sort of used to it, and not worrying about me, but it's not true. I was hesitant to get one, for psychological reasons. I didn't realize he was feeling those reasons more strongly than I am.

This is not surprising. Many times it easier for the patient to accept an illness than for those around him/her.

A wheelchair (when used properly) should not lead to deconditioining any more than a car. At the same time it allows you to do things you otherwise couldn't.
(Like seeing an entire museum and not just the first picture at the entrance).

Without realizing it we gradually give up activities, we could continue to do with proper tools and aids.