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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. H

    Reputable Online MRI / CT Second Opinion Sites?

    Has anyone tried any of these? I'm looking for cost-effective (SS Disability fixed income), and don't want to go further broke on this DD. I'd consider the CCI Drs. that do online consults, but up front I'm not looking for major surgery, so I'm guessing they're not interested in my case...
  2. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    Thanks again for your helpful suggestions and encouragement, Lenora. WVU = West Virginia University Medical Center - They have the monopoly on SW Pennsylvania, Western MD, & most of WV. I'd go to University of Pittsburgh (UPMC Medical), in the general area of where most of my family are, but I...
  3. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    Update & questions: I had to go to the local small-town hospital's ER to rule out stroke, and and they recommended followup with MRI's and their neurologist. (Which I've had to take care of myself; they hospital didn't help with any of that stuff.) I had to go to my PCP to get the MRI ordered...
  4. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    Sorry to hear about probably just a little of what you've been through, Lenora. Your experience provides some valuable tips though - thank you!
  5. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    Dr. Gilete.
  6. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    Thank you Jyoti. It will take me awhile to digest, but I sincerely appreciate your wisdom/experience.
  7. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    Thanks for the encouragement YippeeKi YOW !! I've had zero encouragement and little support with investigating my own health issues. (I'm declining from chronic PEM after taking care of everyone else's health issues. To the point I can only process info at a snail's pace.:sluggish:)
  8. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    Thank you for the tips Lenora. I'm slowly checking with family & friends who have worked for UPMC in Pittsburgh. It's the health "scare" system I have the most problems with. I saw Jeff...Wood's(?) consulting biz, but I'd have to be a charity case! (His story is horrifying - which is why...
  9. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    I received the Aspen collar. It takes a little learning curve to get it to fit & adjust, but so far it is comfortable and fits my small neck. (I'm 5'6" 118 lbs.) I'm sure I'll have to make adjustments as the days go by too. It allows for air flow around the neck, which is good. I don't...
  10. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    Thanks for the tips - this helps. Yeah, I found a bunch of this info in recent days and just got overwhelmed. I peeked on the Forum here figuring you guys keeping up on this subject could offer some guidance through the 'weeds'. I like the Centino guy's videos - haven't caught many of Hauser's...
  11. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    Hi Rufous, I ordered mine from Amazon - $53.80. Aspen Vista Cervical Collar 2-Piece Rigid Neck Brace for Restricting Cervical Motion, 984000 I believe it's the entire device, based on the description. I can let you know - mine is supposed to arrive Thursday 10/20. It's adjustable, so I'm...
  12. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    Thanks so much Judee! Isn't that funny - I just ordered that exact collar yesterday. Maybe there's hope for my brain after all! :)
  13. H

    Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

    A combination of distrust of doctors (avoid medical appointments but for once a year), life circumstances, and 26 years of moderate-severe ME (I'm only 63!) has me overwhelmed, now that I'm finally looking into CCI & similar. My symptoms are getting worse over the past year, especially the past...
  14. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    YippeeKi YOW !! Ditto - Agree! They're polydrugging us with Drug #2, #3, #4 in attempts to hide the nasty side effects of Drug#1. Plus Medicating Normal (<<a new documentary). Creating the disaster and capitalizing off of it. One thing I'd add regarding making ME infinitely worse... the...
  15. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    2Cor12:19 You know your body better than anyone; of course we are all different. I was just relating the contrast of symptoms I've had before, during and after (I had ME 10 years prior to ingesting klonopin.) No doubt they are all intermingling now. My first 10 years of unadulterated ME...
  16. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    Interesting 2Cor.12:19. This was/is one of my more severe and long-lasting klonopin withdrawal symptoms. A few years prior to beginning my taper, I was having increasing paresthesia in my lower legs. As my fast taper progressed into about Month 2 or 3, it evolved into a severe sensation of...
  17. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    Apologies... I didn't see this before, 2Cor. I wasn't receiving notices for this thread after late Oct, and thought it fizzled out. (Probably my rural ISP 'updating' and dropping notices as spam, which is typical around here.) Anyway... Heck, then you know what I'm talking about re insidious...
  18. H

    benzodiazepines

    ...and yet again another ME / benzobrains moment...:xeyes: I just went back to refresh my brain about the above link and see you made some posts there, 2Cor. I'm attempting to read a little now... (is there an embarrassed emoji?)
  19. H

    benzodiazepines

    Yeah, depressing is why I'm very selective about subject lines when I do make rare attempts at browsing message boards. I turned to benzobuddies Success Stories often as a distraction. I remembered something a while after I clicked off the last reply: The valium crossover described in The...
  20. H

    benzodiazepines

    @2Cor.12:19 Thank you. 30 and 21 years - wow, you have me beat! Here's to hoping you weather your taper well! Yes, in hindsight I think I could have gone slower and still probably distinguished between w/d & ME, which was one of my goals. I did slow down in the final month, when symptoms...
  21. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    The links provided in the first post in this thread (at the bottom) would probably be the best places to start.
  22. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    I understand your question. I would NEVER suggest anyone ever do this, but if someone (pwME or not) has been on a benzo long term and cut it by a quarter or half for 5-10 days without doing anything else with drugs or supplement or exertion, they would know. (Don't take my word for it - take...
  23. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    Thank you both for your input. 1) olegsel: There are many alternatives. There are many posts about this on Phoenix. Try the Treatment & Therapies section. (Just to note though... The 'excitement' of this disease was magnified exponentially by the damage Klonopin - prescribed longer than the...
  24. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    I hear ya! To know that a bad situation made MUCH worse could have been avoided if all parties involved were just educated (or not in denial, like so many prescribers) makes me angry and sad (understatement), not just for me but for the millions who have been damaged and who have lost so much...
  25. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    Wow, that sounds almost like cold-turkey benzo withdrawal! (Except the symptoms are that severe and relentless for weeks-to-months, then don't get much better than that for a very long time.) Mercifully is right! I'm so glad you made it through that - it sounds horrific!
  26. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    I'm sorry to hear that, 91. I suspect you aren't the only one; this was part of what I was curious about. So, chemical/toxic exposure (benzos) was your trigger that led to your ME (or cfs) diganosis? Or did you have a ME or cfs dx first, then was prescribed benzos? I'm assuming you're off...
  27. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    Bingo! "Double whammy" is the more concise version of what I'm getting at:thumbsup: I found it helped at first too. The sedating quality was more than welcome, but that only masked the damage done over the longer haul. I worry about Whitney Dafoe and others when I read descriptions of...
  28. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    I'm sorry you have a family member going through this. This is what makes me so angry is to know how really, really bad it is to come off these drugs, and yet no one believes it, just like ME. My ME was moderate-severe, I was a 98lbs skeleton in the early acute stage. Not knowing what it was...
  29. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    Thank you for this awesome article. My cognition is variable & slowly on the mend - even putting together an IKEA chair is tough - much less molecular biology. But I get the gist. (Haven't made it through BIC's entire website yet. Great site and great folks though!) I went down with ME in...
  30. H

    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    (If you are on a benzo and are satisfied with it, this post is not for you.) I wanted to get an idea of how many pwMEs were damaged by a prescription benzo for ME symptoms. My reason for asking is multi-faceted (in no particular order of importance): 1) Like me, did you mistake the slow...