A neurologist recently mentioned to me that some of the muscle difficulties in SBMA could be caused by a lack of acetylcholine reaching the muscles. In a normal person, the muscles get a small burst of acetylcholine every time they contract. In a person with SBMA, the non-enervated muscles don't get much acetylcholine, and that might be the cause of weakness and cramping.
To get more acetylcholine into your system, you can eat foods that are high in choline (pronounced KO-leen). Choline is the "raw material" your body needs to make acetylcholine. Foods that are high in choline are: egg yolks, wheat germ, and liver. You can also buy choline supplements at health food stores.
Note that some of the high-choline foods are ones that people avoid due to fear of cholesterol; therefore, many people are low in choline.
For my part, once I learned about choline, I tried eating a whole egg three mornings in a row. After that, my muscles felt significantly better. However, I didn't want to eat a whole egg every day due to cholesterol fears, so now I eat an egg once per week, and wheat germ on the other days. I definitely think it helps with the muscle symptoms.
I'd welcome any comments or experiences from anyone else who has tried it.
The USDA file of high-choline foods can be found at this link.
Dan, thanks for the information. I will check with our Scientific Review Board to see if they can comment.
If it works for you and does no other harm, I think it is great.
I just received a response back from Dr. Fischbeck.
"Yes, it is true that some of the muscle symptoms in SBMA are due to a loss of acetylcholine release from motor neurons. Acetylcholine is the chemical signal that motor neurons release to cause the muscles to contract, and in SBMA the loss of motor neurons leads to a loss of acetylcholine. However, there is no evidence from clinical studies that eating more choline has any beneficial effect."
If it works for you, that is great. Let us know how things are in six months and a year.
BruceThis message has been edited. Last edited by: Bruce,
I have been supplementing with choline for about six months now. The daily supplementation consists of either:
1. A whole egg (boiled or poached); or
2. 2 Tbsp wheat germ, mixed with applesauce or cereal and milk; or
3. A 500-mg choline capsule, which is available at my local health food store.
After six months, I am definitely noticing a reduction in muscle cramps on days when I eat the choline. Recently I went on vacation and forgot to bring my capsules and wheat germ along. After a week of no choline, I definitely noticed an increase in cramps. Three days after returning home and starting the choline again, the cramping was much reduced. I also believe I feel stronger when eating the choline, but that is more subjective and harder to tell for sure.
However, I am sticking with the choline. For me, the reduction in cramps alone is worth the small effort needed to change my diet. I welcome comments or questions from anyone else who has tried it.
Location: Chicago, IL
My wife and I have been keeping hens for 6 years and we eat a lot of eggs, I average 2-3 per day. My cholesterol levels have always been high but the ratio of good to bad cholesterol has improved with the increase of eggs.
We used to buy better quality "free range organic" eggs. The were notable differences between them and conventional eggs. But the eggs we produce ourselves are dramatically better than the best we ever bought.
I've also experienced dramatically less cramping though I don't know if it coincides with the uptake in eggs. I had been attributing it to a loss of muscle mass, less activity and rarely pushing myself to exhaustion any more.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614