NeuroTalk Support Groups - Anyone Else Having Bad Falls?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Anyone Else Having Bad Falls? (https://www.neurotalk.org/myasthenia-gravis/201912-else-bad-falls.html)

When I was having so many leg problems I was almost ready to get a wheelchair then my neuro-muscular doctor told me to stop taking statins. He said statins was one of worse drugs on the market. Sure enough within a week my legs started getting better.
mike

Quote:

Originally Posted by pingpongman (Post 1056665)

. . .my neuro-muscular doctor told me to stop taking statins. He said statins was one of worse drugs on the market. Sure enough within a week my legs started getting better.
mike

My primary care doctors has me on 20 mg Simvastain tables a day. This is in the class of statins. What are the other options for cholesterol medications? Both my neurologist at my medical group and the neurologist from Stanford know I am on Simvastain, but neither mentioned any problem with it.

-Mark-

I tried Zetia which is a non-statin but it also caused me weakness but my MG is very complicated. I am positive for 4 antibodies. Zetia is pretty expensive.
Mike

Quote:

Originally Posted by pingpongman (Post 1056681)

I tried Zetia which is a non-statin but it also caused me weakness but my MG is very complicated. I am positive for 4 antibodies. Zetia is pretty expensive.
Mike

Here are a few links on the topic:

Statins May Aggravate Myasthenia Gravis

Statin-Associated Myasthenia Gravis

Statin-Associated Weakness in Myasthenia Gravis

Review: Could Simvastatin Cause Myasthenia Gravis?

-Mark-

When I started with muscle weakness, they took me off Crestor (SImvastin statin) for several months. I had no improvement in strength, but my cholesterol went from 170 to 260. So they had to put me on something, so they tried zetia (not a statin) and my cholesterol went down only a little. So they put me back on Crestor and my cholesterol is back under 170. they tested my CK all along and it was normal. I think that is suppose to go real high on statin induced myopathy.

kathie

Or you could refer to the article on statins that Mrs D put up here quite some time ago.

http://www.sciencedaily.com/releases...0510150143.htm

If you don't have super high cholesterol, Mark, why are you on a statin? It can be brought down with diet and "exercise." I put that in quotes, because MGers often can't exercise that much.

Mike is right, statins are one of the drugs that MGers really shouldn't take unless they have a genetically high cholesterol.

http://umm.edu/health/medical/altmed...red-yeast-rice

Quote:

Originally Posted by dyankee (Post 1055931)

Hi: I'm new here (just getting started on obtaining a diagnosis) and have most of the symptoms everyone here has brought up. However, the one that is foremost on my mind right now is that I've had some darn near catastrophic falls over the last couple of years. I fell going up the stairs a week ago Friday and I can barely stay on my feet for more than a half hour or so. Saw a doc at urgent care last Thursday and he says I have a hematoma (after xrays showed no broken bones) with ecchymosis on my right leg. I had two falls last year that really did me in (for weeks, not days). I've given the falls a lot of long hard thought, and I simply can't attribute them to anything specific...not dizziness, not a slip, not a misstep. Now I do have a lot of problems navigating as I have to look directly at the ground to avoid tumbling over some trifling obstacle and my depth perception is at about zero, but I'm darn careful now. I guess what I simply don't understand is why I get SO damaged every time. Is this common?
One thing that I am aware of, is that I don't seem to be able to catch myself; I fall like a tree in the woods...don't get my arms out, nothing.

I'd be deeply grateful if anyone else has experienced this and has some kind of explanation.

The same thing is happening to me!Even as i changed my medicine from MS Contin and Oxys fro breakthrough to Fentanyl and MSIR for Breakthrough(I have been on Fentanyl for two years in 2007-09) I started up the small flight of stairs with a landing 5 steps up,my brain had a signal of 90% power but when i trudged up only 15% power was dished out and my legs just "Folded up"and Down i went with no arms out or anything to break or grab onto!This happened again,and terrified Doctor might blame the Fentanyl i went to work myself as i have studied medical treatments and condition's for over 40 years as a hobby.I am NOT a Doctor but i do learn a lot from reading and any other way of study!I have one of 5 condition's called disk degeneration and that affects signals and pathways up and back down my spinal cord.And also puts up blocks that can slow down signal transmission. Theres nothing i can do about it but maybe this can answer a question for you! The Docs want me to go and see a therapist for pain.I know that thats for a precursor for a wheelchair.No big deal.I have had a great full life and was a stuntman at 21 so ina wheelchair at 56-57 cant hurt!I wish you Pain Free Peace,Rocker Dan

Quote:

Originally Posted by Rocker Dan (Post 1056747)

Hello, Rocker Dan:
I'm so sorry you're struggling with pain and medication...Darn! Life is hard enough, isn't it? But you've brought up an interesting point with your percentage analogy: in all cases, my falls have taken place when a large percentage of my attention was elsewhere. Now I've been aware for some time that I have to attend 100% to my driving; I can no longer "multitask" as distractions can overwhelm my attention. For instance, the other night I pulled over to let another car (with intensely bright headlights) pass, and then...ULP!...pulled back out immediately in front of another approaching car. He was so mad he tailgated me for another mile before he turned off. And I was very, very disturbed that I'd totally missed seeing him. How could that be? I am so darn careful.

Best,
Laurie