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Judith, Wouldn't it be wonderful if we could figure out what triggered spasms and what turned them off. It's obvious that something happens or changes to make them come on or off. Someone could avoid certain things if we knew. I'm glad your painful spasms are gone. Did you change activity...

thanks hoping for a cure Actually, since my posting I think we've kind of figured out what it is and it's neither a spasm or fasiculation. My mom's sensation like a someone took a pitch fork to her muscles is neuropathic. Since that feeling she has also started getting knife stabbing pain in...

There is an individual that has been widely broadcast in italy who is using this and swears by it. He says that it has completely stopped his progression. There is a drug called IPLEX that is suppose to be along the same lines as VEGF but much better. For controversial patent issues it was...

Hi Olly, It's funny you mention it to be similar to lithium because my mom tried that for about 9 mths and it did not do much for her. In the first month she saw improvement but it did not last. However, getting off of lithium was difficult because she saw some worsening upon stopping but...

Thanks Caroline. I think given what I've read and heard, at the low doses for PLS, there are not many severe side effects. I know that this does not work for many and there is only a small % that it works for. In my mom's case, where she has yet to plateau, it's probably not a bad idea to...

You are absolutely right Geo! All my mom's neuros have refused to prescribe it but we have a family friend who is a GP and will prescribe it. Have you Geo heard anything positive or negative about this?

Hi, LDN is a drug. It actually means low dose naltrexone. I've done some research on it and it seems that some PLSers have had success with it, i.e. been able to feel stronger and improve some symptoms. Hope this helps explain it.

Hi, I was just wondering if anyone has used LDN and what their experience has been? thanks.

Geo, It's so nice to have you back! We've definitely missed you. Hope all your computer problems get fixed.

It's great that your husband is a PT. He will be the best person to help himself!