Recent content by IhavePLS

  1. IhavePLS

    Celltex

    TxRR, I am a lifelong disease management professional. Beyond building programs for people with comorbid physical and behavioral health disorders (yes, even ALS and Major Depressive Disorder), I have also done healthcare outcomes research. None of that makes me expert in stem-cell treatment, but...
  2. IhavePLS

    Tremors

    Hi Mike (Atsugi) and everyone, I haven't posted in a while (sorry!).... Wanted to respond that I also have very severe RLS. My symptoms are mainly in my arms; although I still have it in my legs occasionally, having that same sensation in the arms is just as dreadful. When I first starting...
  3. IhavePLS

    PLS progression timeline

    Hi, I've probably had symptoms of PLS since early 2000, although the concensus now seems to be that any symptoms I had at that time were masked by low back problems (I had an L3-S1 fusion - with all the hardware - in 2009). A year after the surgery, I persisted with pain and heaviness in both...
  4. IhavePLS

    Why ALS and not PLS?

    Cam, PLS usually (not always, but usually) starts in the legs, and moves up. There are differences in clinical symptoms as well. Comparatively: ALS: Hyporeflexia; flaccidity; muscle wasting; fasciculations PLS: Hyperreflexia; spasticity; no muscle wasting; usually no fasciculations I have...
  5. IhavePLS

    Just diagnosed with PLS

    Hi Bobbie, my best advice would be that you continue to remain as positive as you seem to be now. Also, be sure read through these threads -- and do key word searches as needed. The folks here can share experiences and insight into PLS that you will find nowhere else (this is the stuff you'll...
  6. IhavePLS

    Odd, but good?

    Hi SK, I hope you are well -- all things considered! My spasticity fluctuates -- it's clearly worse after sitting and walking (I assume this is true for everyone?). Sometimes, I don't even notice it -- but I don't believe it's ever dissipated completely. In another thread, a few folks...
  7. IhavePLS

    What is walking like for you?

    Hi TB, Other than bilateral leg pain, one of my first symptoms was the sensation of "walking in quicksand" and difficulty walking uphill (and up steps). For people who've never experienced this kind of leg involvement, the feeling in the legs is akin to walking in very heavy sand on a beach...
  8. IhavePLS

    What is walking like for you?

    Hi Kathy, actually, Pine Creek Trail is in the Appalachian Mountains (that is a lovely area of the state, I might add). I live in SW-PA. Kathy and SK, thanks to you both for your response as well -- they are greatly appreciated, and I'm certain that certain parts of your response will benefit...
  9. IhavePLS

    What is walking like for you?

    Hi all, In the thread started by ShiftKicker, some of us mentioned the strangeness of this disease, and how oddly unfamiliar the symptoms can be. Along these lines, are you able to describe what walking is really like for you? How does it feel? Can you describe the feeling/ sensations you have...
  10. IhavePLS

    A couple of questions about how to manage with PLS

    Chris, I hope your injuries heal quickly, and that you have no longer-run complications from any one of them. I wanted to say that, at one time or another, I've also had the very same thoughts you've expressed in your initial post. I'd bet that every PLSer has them occasionally -- they're...
  11. IhavePLS

    A couple of questions about how to manage with PLS

    Hi Kathy, many thanks for the enormously kind (but undeserved) words. It's my aim to give others some insight -- even if it is subjective -- in terms of what they might expect, meds, and other. However, I really needed to step away from the forums for a while, only to "unclutter" my thoughts...
  12. IhavePLS

    A couple of questions about how to manage with PLS

    Hi again, SK, Actually, you've captured (very well) my sentiments in your follow-on posting -- and "down the rabbit hole" is the perfect characterization of this whole PLS experience. As with anything that is new or unknown, SK, you'll adapt --- and you'll adapt even to periods of...
  13. IhavePLS

    A couple of questions about how to manage with PLS

    Hi, Baclofen should not make spasticity worse -- it may not improve spasticity, but its chemical composition/properties will serve only to reduce spasticity (or it may not work as effectively), but it certainly would not cause increased tone. Tizanidine can be enormously hard on the liver...
  14. IhavePLS

    PLS & Anxiety

    Hi Dave, I have been a lifelong mental health professional, and so I can speak to this. I doubt that I'll tell you anything differently than what you've already been told, but it's an imperative that you keep PLS in the proper perspective -- don't allow it to become some unknown monster that...
  15. IhavePLS

    *Almost* diagnosed with PLS

    Hi Diane, Your history sure sounds like mine. I also had a major lumbar surgery, and a year out, was told to see a neurologist: "This isn't surgical, Mike. You need to see a neurologist." I've been told that it's probable that I had PLS before the surgery -- but that the surgical issues were...
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