Did you have trouble with your feet rolling in? Or just tired legs?

Hi Erin, did your feet and legs just keep progressing to the point you couldn't walk? I wonder what happens does the medicines stop working? I am on IMURAN 6 A DAY, PREDNISONE ONE HALf every other day, and Mestinon.
What do you take? What do the doctors tell you with MG will yours progress more? My symptoms are strange. If I sit down at home I will just about fall asleep I am so tired. Sometimes if I start moving I can do some things, but the next day I pay for it I will get exhausted and achy.

Thanks Redtail, I feel sorry for the 14 year old. It must be hard.

Before I was diagnosed or had any treatment of any kind, my legs became progressively weaker and weaker until one day when I could no longer bear any weight at all on my legs or walk. I couldn't lift them either and had to use a wheelchair for 2 1/2 months. Then I had a remission for a while.

When my MG progressed again, I became weaker and weaker again and my knee would start to give out at times when I walked. I went into an MG crisis and needed help to the ER walking and I am certain I would have needed a wheelchair again but they put me on mestinon and predinisone thankfully when they began to suspect MG (after I told them I was being tested for it). But even on those meds, I needed a walker for over a month because my MG wasn't stable enough. I went into another crisis and got IVIG for the first time and within 48 hrs, I could walk again unassisted and now I am fine walking.

I am still receiving a whole lot of IVIG treatments....debra

Barbara, First of all, you absolutely need to see your neurologist. They have the expertise to say whether or not your "new" symptoms are MG-related or not. For example, the Babinski sign/reflex.

You could be tired from your meds but the fatigue could have another cause like thyroid or vitamin B12 or other vitamins. Your doctors need to QUIT chalking every new thing up to MG. A B12 deficiency, for example, makes you feel tired ALL the time. MG fatigue is usually variable.

And don't underestimate the benefit of physical therapy. It can help wonders. But first you need a full assessment by both your primary doctor and your neurologist. A comprehensive metabolic panel is often very useful to run too.

There's no way to predict how someone's MG will go. You are on a lot of meds and should be better. They may want to try IVIG or something. But first, make absolutely certain something else isn't going on! I'm sorry you had to quit working. That was the ultimate defeat for me.

Try to find something you love to do. You probably can't do it very often during the week but it will help to make you feel useful. I hope you can figure out what is going on and get help. Hang in there!

Annie

Thanks for the advise Annie. They do give me regular bloodwork and have given me a Thyroid test. Are 6 Imuran
a day a lot for one person? I know they must have a lot of side effects in theirselves.

Thanks for the information so much. But I don't have any insurance now. I heard that The IVIG treatments are very expensive. I hope Obama will do something about people that can't afford insurance.

When I get really weak, my legs can't hold me up. But my all-day-long problem is weakness in my side muscles, so that I have trouble holding my upper body upright. I tend to tilt from side to side from the waist up. The problem with the walker is that my arms are sometimes too tired to use it.

The walker is very useful for me if I'm going somewhere that requires a lot of standing around, because it has a seat. Great for check-out lines and the zoo! I think standing wears me out even more than walking.

Abby

I might have to get me one of those. Thanks

I really highly recommend it! They're cheap and lightweight--roll very easily. They fold up to fit in a car trunk. It's wonderful being able to sit down whenever you need to. It allows me to conserve my energy, so I can do more. For instance, if I need to shop for something at the electronics store, I don't have to be standing the whole time--I can sit while I examine something on the shelf, and while I'm waiting in line.

At the same time, it allows me to walk instead of be in a wheelchair, so that I don't lose what muscle tone I have.

Also, you can stow things in the basket or hang a big bag from it, so you don't have to carry things.

Abby