Cholesterol Poll

[PDaddy]

Here is an official poll to see if there is a trend for cholesterol levels for PALS:

[jimercat]

PDaddy-

My husband's cholesterol levels have always been normal. But, now that he is on a high fat diet, his level is elevated.

So, are you asking if levels have always been high or what? I've read all the technical medical jargon re cholesterol and ALS and could not explain it to anyone if I tried! LOL

[Al]

I assumed he meant high before ALS. Who cares if it's high after? What's it going to do then? Kill you? Might be a better way out. Maybe.
AL.

[sharonca]

Great one Al!

PDaddy - I was asked same question on another forum a few days ago.

253 before - 234 now.

Sharonca

[PDaddy]

Thanks all, we read somewhere that folks with low cholosterol have higher odds to get MND issues. Mine has always been low, but within the norm. Like 110.

So, my wife put me on a 'bacon diet', cool huh? Bacon and eggs for breakfast and bacon cheeseburgers for lunch, what a way to go! :-)

[BethU]

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. ...
Beth

[PDaddy]

...
You finally get your cholesterol down, and you get hit by a bus. ...
Beth

Damned bus! I've always hated buses, now I know why.

[happy]

Oh, Beth...that makes me sad. PDaddy, are you trying to get your weight up? I thought I read in your orignal post that you were slightly overweight? I'm lost. Is it high or low with Als?

[PDaddy]

Oh, Beth...that makes me sad. PDaddy, are you trying to get your weight up? I thought I read in your orignal post that you were slightly overweight? I'm lost. Is it high or low with Als?

Yes I am overweight, but it doesn't seem to matter much now...

[happy]

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!

[PDaddy]

Nope, I didn't take it wrong at all! We (one way or another) are all in this together... :mrgreen:

Where's the bacon?? hehehehe

[sharonca]

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.

Sharonca

[kevinw]

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.

[BethU]

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 dx 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.

Beth

[PDaddy]

Speaking of Doctor's advice at DX time - mine said if I wanted to travel, this is a good time. That was eye opening! And by the way, my diet is off, way off! :?

[DeeMichelle]

When he got his Dx my dad got taken off cholesterol med Dr said fat could be good for ALS- as it's familial for us I've loved butter, cheese and ice-cream ever-since...I eat the healthy fats too mind..
Dee

[jimercat]

Jan 16, 2008

Part of article published in "Neurology"

"Methods: Blood concentrations of triglycerides, cholesterol, low-density lipoprotein (LDL), and high-density lipoprotein (HDL) were measured in a cohort of 369 patients with ALS and compared to a control group of 286 healthy subjects. Postmortem histologic examination was performed on liver specimens from 59 other patients with ALS and 16 patients with Parkinson disease (PD).

Results: The frequency of hyperlipidemia, as revealed by increased plasma levels of total cholesterol or LDL, was twofold higher in patients with ALS than in control subjects. As a result, steatosis of the liver was more pronounced in patients with ALS than in patients with PD. Correlation studies demonstrated that bearing an abnormally elevated LDL/HDL ratio significantly increased survival by more than 12 months.

Conclusions: Hyperlipidemia is a significant prognostic factor for survival of patients with amyotrophic lateral sclerosis. This finding highlights the importance of nutritional intervention strategies on disease progression and claims our attention when treating these patients with lipid-lowering drugs."

[PDaddy]

Thank You Cj!!

[mndireland]

I wonder if the medication for cholestrol has anything to do with this awful disease, everyone who has it seems to be on medication for cholestrol, and ive read on other sites this may be a factor. My mother was always well and a year ago she was put on medication for high cholestrol and blood pressure tablets, a few months later dx with als,??? I dont know, but when i told the neuro she was on the cholestrol tabs she took her off them straight away??? Suddenly high cholestrol is not such a problem???

[kevinw]

mndireland....same here, when they found out that my problem was something to do with motor neurons, they had me stop the cholesterol medication right away. Yea, the neuro problem became more important than the heart problem. :?

[BethU]

About statins ... I've been taking a supplement called CO Q-10 for several years, as I was told by a nurse (and read it also) that statins reduce the amount of this element in the blood, and that people on statins need to take supplements to replace it.

Then I read very recently (on this website?) that there was a test going on treating ALS patients with large doses of CO Q-10. (However, I think the test ended and showed that it didn't help.) But it seems like a strange coincidence. Taking CO Q-10 clearly didn't help me avoid ALS ... and as Kevin said, it's too late to worry about it now!
Beth