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  1. M

    Stiff muscles behind the eyes

    One of my first symptoms at onset was a feeling that my eyes especially my left eye felt like it was twitching or moving back and forth in the eye socket. I get that symptom often but others say they can't visibly see my eyes moving around. But it's such a bizarre feeling. I've had my eyes...
  2. M

    Spasticity question

    I have a ton of spasticity as well. I recently started swimming a bit which seems to help me and is easier than walking a lot plus is excellent stress relief. I also take zanaflex for spasticity which has helped my walking a bit more as well as helped my throat a bit so I can swallow and breathe...
  3. M

    Hi, new here and desperate to talk!

    I'm very sorry to hear about your family situation. I'm 35 and had a very sudden onset at 33. Doctors thought it was all stress and anxiety up until I finally found a neuro who actually listened and tested and took me serious. I use a walker and lost my speech completely within months of onset...
  4. M

    Overcoming humiliation

    I felt extremely self conscious when I first became disabled a bit over two years ago. I was 33 at the time and loss my ability to walk normal within a week and been using a walker since. I also lost my speech entirely within two months of my onset. I only got a diagnosis of PLS a couple months...
  5. M

    Extreme fatigue

    Im with you on the fatigue. I never felt so tired before my onset. I got used to the fatigue over time by just pushing through. But some months are worse than others so then I do nap if I can. Since I just got recently diagnosed and am now on meds though I feel often like I'm even more tired. My...
  6. M

    Rilutek?

    Sorry to hear she was allergic. I am real sensitive to meds too. I don't know if it helps symptoms. My main med, zanaflex is the one helping. But if there's a chance it will slow progression then I will continue taking it as long as can. Unfortunately it's super expensive.
  7. M

    Hello! 33 and neurologist thinks have PLS

    I'm glad that doctors were compassionate and on your side. Dealing with the disease and not knowing what it is is stressful enough. People were stunned when they saw how I could not speak and walked weird that doctors thought I was perfectly fine. So for me I was worried every time I saw a new...
  8. M

    Hello! 33 and neurologist thinks have PLS

    Olly, Yeah it was a very fast progression that first year with the second year having a bit slower progression. I'm now trying different meds so hoping speech and walking will improve. Swallowing and breathing has already improved a lot recently,as my neuro was concerned I might need a Peg. So...
  9. M

    Hello! 33 and neurologist thinks have PLS

    I am 35 and started having symptoms at 32. My onset was super fast. I had some weird muscle spasms and then within a few weeks I started walking really weird and my balance was off. I was given a walker. Then my speech started stuttering and within a few months was completely unintelligible. I...
  10. M

    Rilutek?

    Thank you to all who responded. I'm sorry it took me so long to respond back it's been crazy with the holidays. So far no side effects. I will continue to take in hopes will slow progression and not turn into ALS.
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