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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. nenej2015

    show 2nd opinion neuro the records from prior dr who wrote me off?

    Ok. Will do;) can't thank you guys enough for the good advice. Hoping you all have a relaxing, pain-free evening with lots of sleep tonight. Thanks TigerLilea;)
  2. nenej2015

    show 2nd opinion neuro the records from prior dr who wrote me off?

    Oh wow - thank you VERY much for that. Haha you are very correct about the fragile egos of said 'experts' lol. Very well said lol. Ok you've lessened my anxiety exponentially about this stupid appt!! You've given me a solid game plan on how to proceed. Thank you so very much!
  3. nenej2015

    show 2nd opinion neuro the records from prior dr who wrote me off?

    Daisybell - I think you and the other ladies are correct after reading the unanimous replies. I'm not going to give the prior notes and will hope for a more receptive doc this time around. I actually just made an appointment with dr Kaufman in CA for his next available on July 20th. Im going...
  4. nenej2015

    show 2nd opinion neuro the records from prior dr who wrote me off?

    Very good advice and I thank you for it. It sounds like you found a dr receptive to you. I'm very glad to hear that
  5. nenej2015

    show 2nd opinion neuro the records from prior dr who wrote me off?

    Jaime- you are so right! You sound like a very well organized and knowledgeable person, well versed in where to find the scientific studies and info that pertain to your specific situation. I can only imagine how stressful it must be for you to try to convince these people to look at what you've...
  6. nenej2015

    show 2nd opinion neuro the records from prior dr who wrote me off?

    Thanks for giving me a voice of reason on this. My former analytic brain doesn't automatically assess situations like this effectively as it once did. And I was afraid I'd be caught up at some point f I didn't and be deemed as not forthcoming. I'm so tired of trying to navigate these...
  7. nenej2015

    show 2nd opinion neuro the records from prior dr who wrote me off?

    Sarah - THX so much for your reply. I'm sorry to hear about your traumatic situation and subsequent ill treatment by the 'experts' you consulted. That's a very good point and I'm not going to mention those things in future so drs won't get hung up on it. And you are right about my job being a...
  8. nenej2015

    show 2nd opinion neuro the records from prior dr who wrote me off?

    Hello - I'm still in the process of finding local specialist drs (as required by my employer to complete LTD forms justifying my continued inability to return to work) who will take me seriously and not just send me back to another psych dr. My rheum isn't really on board saying he tested me for...
  9. nenej2015

    My Experience With Dr. Kaufman at the Open Medicine Institute

    I've apparently lost my ability to punctuate lol. Sorry for the massive run-on sentence
  10. nenej2015

    My Experience With Dr. Kaufman at the Open Medicine Institute

    Thanks tons for that info;) I called and made appointment with kaufman today for July 20 and now will sleep easier with info you just gave. I've Been told not to come right out and ask drs first thing if they are willing to take over ltd forms from prior docs who tried all in their fields on me...
  11. nenej2015

    My Experience With Dr. Kaufman at the Open Medicine Institute

    I'm so happy to hear about your progress and hope for your future. I'm in AZ and at the point in my LTD timeline where my employer is requiring a specialist - not the PCP who finally diagnosed me with SEID after viewing all other soecialist records where they found nothing to explain why I still...
  12. nenej2015

    Phoenix Doctors

    I've recently been seeing Amir Harari in Scottsdale. I like him because he does let me take cytomel/t3 and twice daily even though my t3 labs are borderline high. My sister is seeing a mayo clinic endocrinologist that we all thought would answer all her problems but that doc says Mayo doesn't...
  13. nenej2015

    Does anyone here live in Phoenix, Arizona?

    I've lived in Phx for 43 years:(:(:( the summers suck whatever energy I have right out of me. I actually daydream of being where you are if you are in te UK lol. I watch as many bbc etc shows as I can as Im beached on my stupid couch. My allergies have gotten really bad last couple years. They...
  14. nenej2015

    Has anyone achieved remission or recovery from treatment by any doctor?

    I completely understand;) I'm at a stage now where I've tried all other conventional specialists who have found nothing in my labs or scans to show why I'm still incapacitated. I've been on long term disability for 14 months now and my clock is running out in that respect because my employer...
  15. nenej2015

    Has anyone achieved remission or recovery from treatment by any doctor?

    If you don't mind - can you post which CFS specialists you and your family members went to?