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About zerohours000

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    Political Economy; Film; Poker; Mah Jong; Basketball

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  1. zerohours000


    Thanks for replying. I’ve set up a follow up appointment and have an appointment with my PCP soon. My neuro doesn’t think it’s PD. But have you ever heard of FND, functional neurological disorder? I hate guessing but not one doctor has suggested anything to me. Best Zer0
  2. I would hang out where people could better help but where is that? I’ve been to a myriad of doctors but they’ve been pretty useless. I would also love to see a more defined specialist...but who is that? I’ve heard of something called functional neurological disorder, which I’m going to bring up at my next appointment, but I keep getting conflicting advice. Some say don’t lead your doctors, let them do their jobs; others say you have to fight, etc. It’s been a very demeaning experience. Hope you’re well, SD. Thanks for replying and for the article. I was also told about this show on Netflix called Afflicted, about unsolved medical mysteries. Best Zer0
  3. zerohours000


    I feel like they wouldn’t provide that based on my symptoms. Do I just request this? Thanks again Zer0
  4. I agree with all of this. A few months ago, just after this began, I was in a much worse place mentally. But I’ve been telling myself “it is what it is” and nothing can change what it is, right now. My biggest bugaboo, currently, is I’ve no idea what “it” is, regardless of the accuracy of the idiom. I’m not sure why I came back to thinking PD. When it was just the twitching I was worried it was ALS. Now I’m still kind of worried it’s ALS. Though, a lot of my twitching has subsided. It was awful a few months ago: This ^ was in like May. And lasted until the end of June. It went away in my arms but I still get this in my quads (front and back), calves, lips, and chin. This was deemed benign fasciculation syndrome. Someone did say BFS can cause a variety of symptoms. I’m not sure if sleep disorders or GI issues were among them. As always, thanks for replying. And thanks for the advice. Best, Zer0
  5. I see. I think I had read it somewhere on another forum. I agree, that it’s been said a few times it doesn’t look like PD. My problem is I can’t seem to get an answer as to what it *could* be. I had another neuro say it wasn’t ALS; had a doctor do an EMG two months ago and my twitches and EMG were “normal” with no neuropathy/denervation, Had an MRI in maybe April/May and no lesions; ER doctor said MS unlikely; scan was unremarkable. Had biopsy on skin for small fiber neuropathy—nada. Bloodwork: low d3; positive ANA (which is like for autoimmune type stuff but rheumatologist said no) So I’m kind of stuck. And I’m not sure what I can do right now.
  6. zerohours000


    Hi. Thanks for replying. What exactly is a neurological consult? I asked the neurologist on multiple occasions how worried I should be about PD and he said none whatsoever. But I just don’t understand. No one has even told me plausibile explanations for what it could be. I have internal vibrations, twitching, tightness in hands, poor sleep, disequilibrium walking. I just can’t seem to get any answers on this. Thanks Zer0
  7. zerohours000

    33m. Worried of YOPD

    They didn’t say it was nothing. Just that it wasn’t PD. But something is amiss. That much I know.
  8. zerohours000


    I recently stopped taking Mirtazipine and noticed my left hand, which had stopped twitching etc the day after I’d taken it, is now feeling like it did before. I read that Mirtazipine is a dopamine agonist. Is it possible it was masking PD symptoms? Does this qualify as some empirical testing? My neuro said he doesn’t think this is PD, and there’s no need to see a movement specialist. However, no one has told me what this could be. So I’m left to speculate. My symptoms don’t come and go but are 24/7. So GAD or depression seem so unlikely. Especially since I’ve had it before and didn’t manifest like this whatsoever. Im now beginning to have painful stings in my toes and fingers on both hands and feet. My walking is getting labored. I can only sleep 3 hours at a time. Should I seek out another opinion? Thank you, Zer0
  9. I’m worried the Mirtazipine was actually masking PD symptoms. When I first took it, the issues with my left hand actually went away. It never helped me get to sleep though. It made me tired the very first day I took it but nothing afterwards. 🤷‍♀️
  10. Im also on Celexa. I was on a SSRI for 8 years until 2014; then off until two months ago when my mood became way worse. I was on benzos from 2006-2014 as well. I was briefly on benzos for like 3 months this year and just quit because I’d rather not get back on them. I’ve never heard of that long a latency period causing issues (almost 4 years) but I also don’t know what else it could be either. My doctors don’t seem to think it’s PD. But then again, I’m not sure 5 months worth of symptoms is much to go on. I’m going to try and get in contact with a movement specialist soon. Zer0
  11. I have other symptoms: GI issues; tightness in hands; twitching; walking issues; pains in toes and fingers and wrists; easy cramping; and some shakiness; as well as burning pains —which I take gabapentin for. My sleep has improved a bit. I also used to be up until 6am every morning. I also have violent full body jerks before sleeping; and have lost that power-down mechanism. And I sometimes can’t complete yawns. Very bizarre.
  12. I see. I’m 33 as well. I had nothing preceding my current symptoms. I had anxiety and depression I overcame. But nothing since 2014 on that front. I have no dx. And my neuro said he doesn’t suspect PD while my PCP said I could be at the beginning, middle, or end of something—which is so vague as to be meaningless. My sleep is like, I go to bed at 1:30, get up between 5-6; go back to bed until 8-9 am. Maybe a nap at some point during the day. I never feel tired. Or like I can go into shutdown mode. Very uncomfortable.
  13. Is your sleep disturbance due to the tensing? Or its own thing?
  14. zerohours000

    33m. Worried of YOPD

    It’s not nothing. That much I know. I guess it’s good they don’t suspect PD, but they also said it could be too early for anything to have manifested in 5 months to the point of being conclusive.
  15. zerohours000

    33m. Worried of YOPD

    Thanks. But I just think it’s too early to even know, I guess. Most stories I’ve read, it takes a while to dx. I’m skeptical and think time will sort it out either way. I’d rather see a movement specialist but I think even then they’d say little or have it be inconclusive. Everyone’s symptoms seem very different. So we’ll see.