Recent content by Moonwolfy

  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.
  11. M

    Rilutek?

    I was just prescribed Rilutek for my PLS and was wondering if anyone else has ever taken? My doctor said it will hopefully improve my swallowing and speech. I was just tried on a very low dose of zanaflex and I was able to speak for first time in two years, which was a miracle. However, it...
  12. M

    I'm new here

    Billbell52- thanks for your responses. I appreciate the info. My neuro gave me very little info and some of it I did not understand and since it's not the easiest to communicate I decided to do my own research and bring in questions at each appointment. But he's a busy guy..a great neuro..just...
  13. M

    Was wondering

    Old dog and billbell52 thanks for responding. The video is helpful thanks. I went for my evaluation and the doctor was very nice and understanding. He said he was willing to put a Peg in due to how fast I have progressed in only 2 years. I told him I wasn't sure that this was overwhelming as I...
  14. M

    I'm new here

    Thank u Beky and LouLou. I'm going to find a local support group. I've decided that now after posting on here and talking to a few people here that it's time that I try to find a group locally. I been so isolated for too long. I'm too young to be doing that and I want to meet people similar to...
  15. M

    Was wondering

    Thank you again Beky. I think I'm just feeling a bit down and anxious. I have not really had anyone to talk to as my friends and family often get confused and really worried. So I often bottle my worries and frustrations up and act like I'm completely fine and ok. I think a lot of it is a lot of...
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