Recent content by sral

  1. S

    Doc mentioned PLS

    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...
  2. S

    Spasms versus fasics ?

    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...
  3. S

    Maybe good news

    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...
  4. S

    Has anyone used LDN?

    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...
  5. S

    Has anyone used LDN?

    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...
  6. S

    Has anyone used LDN?

    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?
  7. S

    Has anyone used LDN?

    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.
  8. S

    Has anyone used LDN?

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

    Rediculous security

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

    Physical Therapy, Not what it's cracked up to be.

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

    drugs

    thanks and yes, please keep us posted on how you're doing with it
  12. S

    Your Doctor Is Not God

    rambling is okay with us! I'm happy that you're 17 years and counting and still doing exercises - that's fabulous
  13. S

    drugs

    Alisa, My mom has not been successful with balcofen or tizandine/Zanaflex. She feels exhausted all the time. They told us that the balcofen pump would take a year of monitoring doses before it can be done. Do you feel you've benefited from it?
  14. S

    Pls

    I think many physiotherapist don't understand the underlying neurological conditions causing the symptoms. For my mom, I'm telling the therapist what I believe she needs and then she tells her what exercise to do. My mom thinks she's lazy because she does not spend much time with her. Some...
  15. S

    Spasms versus fasics ?

    Crystal, Thanks for your response. Does a spasm feel like your muscles are bouncing around? Have you had both spasms and fasics? Do they feel different? This is second party communication and I apologize. I'm trying to describe the muscle feeling she's having based on how she described...
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