[Stellatum]

So, I figured that always holding onto my husband isn't really a solution to my teetering, though I do enjoy it. I considered a rollator, since I noticed a shopping cart works for me. My kids loved the idea. I think they thought they were going to get a lot of rides. But I found that two canes work just fine.

My problem is not weak legs; it's weak side and back muscles. I tilt left and right from the waist when I walk. I have the canes adjusted long, and I place them on the ground at an angle. Good for giving me two hind legs for standing, too, because sometimes I tilt backwards.

[AnnieB3]

Abby, Your arms may be okay now but they soon won't be if you are using two canes!!! A walker or one of those walkers with a seat is much better for staying steady. I can almost see the cartoon of you going flying, with the canes in the air, and you in a dust pile on the ground. If your balance is off, any PT or neuro will tell you that two canes is a disaster waiting to happen. Sorry to be so blunt but it's dangerous.

And doctors can prescribe those things so you can get them paid for. If you are a high fall risk, then you need to get help!

When my back was bad last summer and I used a cane, my arm muscles got completely fried. I thought I could make it to a family event with a cane instead of a walker. Really stupid. My back just got worse too.

Seriously, be careful.

Annie

[Stellatum]

Annie,

I think the more reasonable part of me knows that I'm supposed to talk to my neurologist about this, get a referral to a PT, etc. But I just don't think my neuro gets anything about my condition--he prescribed me a soft cervical collar that was useless--and I am waiting six weeks for my appointment with the neuro who is supposed to know.

My insurance has a high deductible, so I'll be paying for whatever equipment I end up with. I'm willing to spend the money for what I need, but I have a feeling that whatever they tell me to buy will just end up in the closet.

Am I at risk for a fall? I have ended up on the floor twice since I got this disease in October, and both were collapses--straight down, not tipping over or stumbling. For all my tilting and swaying back and forth, I haven't fallen. But I am getting worse, so I guess I should take that seriously.

You're right about the arms. I feel it.

Thanks again for giving it to me straight. I am not stupid enough to think I should be self-treating (I'm just stupid enough to do it anyway!). But I'm getting discouraged with the lack of treatment I'm getting.

Abby

[Stellatum]

Annie--just to let you know, I took your comments to heart and I called my neurologist. I left a message, and the secretary said he'd call me back. I want him to send me to a physical therapist or something who can tell me exactly what I need and how to use it.

Meanwhile, I didn't bring my canes to my kids' home-school co-op today, because I didn't want to draw attention to myself. Right. Crashing into walls and tottering around was inconspicuous, after all. It was an especially bad day.

I am trying to make the proper psychological adjustments, but that's hard to do when things keep changing on you.

Thanks again,

Abby

[AnnieB3]

Abby, Good!!! I have a walker. I hate to use it but it is much safer than canes. You still have to use arm muscles but at least there's less of a chance of falling.

That collapse episode you described sounds scary. Has anyone checked your potassium when you are bad? There is something called Hyperkalemic Periodic Paralysis. Since they haven't definitively figured things out yet, they need to be thinking of any possibilities.

http://www.nlm.nih.gov/medlineplus/e...cle/000316.htm

I hope you will get some help from your docs. The cause matters but so does helping you in the meantime!!!

Annie

[Stellatum]

Thanks, Annie. As my disease progresses, I am starting to wonder if it's MG at all. I'm wondering if it fits the LEMS picture better. The specialist I'm going to see in May ought to know.

What makes me tilty seems to be my hip muscles. When it's bad, the back-and-forth motion of walking sends me too far in both directions. It seems to me that normally, when you take a step with your right foot, you sway slightly to the right--but your left hip muscles clench and stop you from swaying too much. Mine don't clench well, so I just keep going until I either catch myself or crash into something. At least that's what I think is happening. I tilt from the waist up, but if I tilt too far, my whole body follows. That's when I crash into walls.

That's why the canes are so helpful. I stick them way out to each side, like those supports you see on a truck with a cherry-picker, or like flying buttresses, and they keep me from tilting too far in that direction.

My upper arms are weak, but only mildly. My other big problem is what I thought was my neck, but now I'm thinking may be more my upper back/shoulders. I have no trouble chewing and swallowing, and my eyelids are fine. I was having a bit of double vision, but not since I started the Mestinon.

My doctors keep testing my potassium, because I take HCTZ as a diuretic to prevent migraines (not a typical treatment, but it has worked wonders for me!). I see that HCTZ is a treatment for hyperkalemic periodic paralysis, too, so I have a good start, huh. Well, I've never been a smoker, and as far as I know I don't have cancer. But I know that half of LEMS patients don't. So it's something to consider.