Hi ... before I started taking meds for cholesterol a decade ago, it was very high ... 300++. I've been taking max dose of statins and niacin since heart attack in '94.
Dx'd with ALS 2 weeks ago by 6th neurologist (bulbar symptoms so far ... speech is almost unintelligible, swallowing very tricky, choking and coughing, double vision, blurred vision, shortness of breath, had respiratory failure in December with entubation, but lungs are OK now). Have lost 25 pounds since symptoms started 2 1/2 yrs ago, but have kept weight steady since January with cheesecake and Ensure.
I cut back on niacin months ago, as I could not swallow all those stupid pills ... 4 a day ... but still taking highest allowable dose of statins. Last time I had cholesterol checked (a year ago), it was right where the doctor wanted it ... about 150, with very high "good cholesterol." But as has been said elsewhere, that's not my primary concern!
You finally get your cholesterol down, and you get hit by a bus. ...
PDaddy, I hope my comment about weight did not come out wrong. I am just trying to understand if high or low cholestorol is common with Als. And I do agree with you about the quality of life...weight in this case is a minor concern. Enjoy your bacon, you deserve it!
My neuro told me that high chol is good for ALS. He said that mice with ALS and high chol live longer. It is an upside down world here in ALS land. He said not to try to up it but don't do anything to lower it.
Could it be that the statins in cholesterol medication does too much damage to the liver and it no longer filters out the toxins that are attacking the motor neurons? If that's the case I'm sure the damage is already done for those who have taken them for a long time. All I know is that without the statins my cholesterol is in the high 400's, with a bad offset of the "good & bad" cholesterol. Oh well, even if they were the start of the problems for me it doesn't seem to help being off them at this point.
Hi all ...
Interesting thoughts about high cholesterol being good for ALS patients. Don't know if it's true, but since cholesterol is manufactured by the body, it must have some function!
I think docs try too hard to achieve artificial numbers on cholesterol, but they went to med school, not me. When I get to see neuro #7 (my latest referral) in a little while, I'll see what he sez about continuing statins.
When they diagnosed me 2 weeks ago, the doc who did the EMG said "forget about cholesterol and diets, just get as much nutrition as you can." Which I've been doing since January ... lost 12 lbs in December alone, so am eating anything/everything I can manage to swallow.