Thanks, Sue! I needed that.

My reflexes are equally nonexistent! So I guess, according to your neuro, that's a good thing.

I'm not going to worry about it.

You know, Rose - who was on the forum a long time but now isn't - was an incredible resource on the topic of B12. I miss her. I wish I could remember the book she cited about how B12 is not making it into "the food chain" anymore. Cows, for example, are being found to not have it in their bodies either (most B12 is from meat). That's why vegetarians need to supplement with it. And now so many other people.

Annie....I hope you don't mind my "hijacking" your post. I saw a post you made earlier this year, and wanted to get in touch with you. We are in the process of diagnosing my son (15). It has been long and very very slow. In a prior post this year, someone was discussing limb-girdle, and you mentioned CMS and testing for it.

My son has had a positive EMG during RNS. Acetylcholine was negative. We're waiting for MuSK results, and they are also checking Carnitine and Acetylcarnitine. In the meantime, Neuro (who does not communicate much or well) referred us to UC Davis. The other option we're looking at is trying to get him to into Mayo. Both of these were the options you mentioned in your earlier post in reference to CMS. You seem to be very knowledgeable/experienced and I am grasping at straws trying to help my son. Any advice?

I actually do mind when people don't stay "on topic," sorry.

I started a separate post for you, mainly so that others can see it and help you too.

Annie

So very sorry.

Thanks, Sdmama. I'm not angry. I like to respect everyone's need to have appropriate info. Yours too!!!