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  1. Dechi

    Alone and Needing Back Surgery-need advice

    What a relief that is ! I thought you sounded familiar, now I know why... Let’s hope this freaking pain never comes back. And I hope this EMT jerk was fired.
  2. Dechi

    Issues w/nausea in PEM

    I do have nausea sometimes when I have PEM but not to the point of throwing up. I take Ginger Gravols and it helps.
  3. Dechi

    Phone consult with Dr Teitelbaum ?

    From all the comments, not worth it ! Thanks.
  4. Dechi

    Phone consult with Dr Teitelbaum ?

    Thanks for that. Not very inspiring. Dr Hyde has closed his office since summer to take care of his sick wife. We don’t know when he will reopen. Some people say in October but I suppose it entirely depends on his wife’s health. Also, Dr Hyde doesn’t treat patients. He does diagnosis and...
  5. Dechi

    Phone consult with Dr Teitelbaum ?

    I am desperate to find a doctor who will prescribe off label, typical ME drugs. I am currently on no treatment plan at all, never had one and I want to change that in hopes of getting better. I saw Dr Teitelbaum does a 3 hour consult by phone with a treatment plan and since I don’t know much...
  6. Dechi

    OI is getting worse - what meds can help ?

    I’ve never heard of that profession. Do we even have those in Canada? I will look it up, thanks ! I’ve checked and they seem to be technicians who do the radiologies. They don’t see patients, at least in my area.
  7. Dechi

    OI is getting worse - what meds can help ?

    @Alvin I’ve been trying to find a specialist for a while but haven’t had any luck. I’ve asked help from my current GP, we’ve sent a referral request to a fibro clinic (I figure they might want to prescribe off label drugs for me) and had no response. I will ask her again for a dysautonomia...
  8. Dechi

    OI is getting worse - what meds can help ?

    @Alvin we definitely need ME/CFS clinics to start with. I’m sure if they also treated fibromyalgia they would have enough patients to justify the clinic. I got an emergency appointment with a doctor two days ago, I went to ask for help with my dysautonomia syptoms. He didn’t know what...
  9. Dechi

    OI is getting worse - what meds can help ?

    Thank you @Seven and @Webdog My real concern is that so far, my doctor has refused everyone of my requests to try off label medication. She also knows nothing about ME. She tries to be helpful but really she doesn’t know what to do with me. :-( Let’s hope she takes this issue seriously. It’s...
  10. Dechi

    OI is getting worse - what meds can help ?

    I’ve looked in to it and it would be my dream to get treated at his clinic ! Everything he describes I have as a symptom. I would like to try Mestinon too. I asked Dr Hyde last year but he said it was a very potent drug and did not recommend I take it.
  11. Dechi

    OI is getting worse - what meds can help ?

    I have never heard of him @brf . Thank you, I will look at the infos you posted.
  12. Dechi

    OI is getting worse - what meds can help ?

    I did a table tilt test a while ago and it showed that I had neurally mediated hypotension (NMH). It was mild when the test was done a few years ago, but it’s getting worse and worse. Today I ran an errand and had to have the clerk escort me back to my car. I was about 5 minutes in the store...
  13. Dechi

    Appropriately and Accurately Assessing Symptoms in Patients with ME

    Thanks, I appreciate that. I subscribed. Did you ?
  14. Dechi

    A-level results: Student with ME gets As

    I’m happy for this young woman but I am not completely sure how I feel about this article. There are several levels of ME and many afflicted people, although they have, or used to have, the IQ to score A’s, would simply not be capable of attending classes, let alone study. I’ve read one study...
  15. Dechi

    Hair loss and changes to fingernails

    I started losing more hair maybe 3 years ago. I was going mad so I tried a few things and this stuff really works. I’ve been using it for 1 1/2 years now and it has made a tremendous difference. My hair is a lot thicker and it’s even grown in new places (the hair line on my forehead is a tiny...
  16. Dechi

    Red-brown speckles on palm of hands and fingers

    @TiredSam I guess it’s like me having no sense of direction at all. When I stop for directions, if people tell me to go north, I don’t know where to go. Sometimes I just pretend I get it, leave and find someone else to explain. This is not dangerous but very, very annoying.
  17. Dechi

    Red-brown speckles on palm of hands and fingers

    @TiredSam I am curious to know how you’ve compensated for not distinguishing left and right ? And if you don’t find the concept necessary, how would you efficiently convey informations that are pertaining to that concept ? I just moved and had to rewire my home cinema and hi-fi stereo...
  18. Dechi

    Red-brown speckles on palm of hands and fingers

    I noticed they’re not only on the palm of my hands. They’re on the I side of my arms too. And probably other places, except I can’t see well enough to tell.
  19. Dechi

    Red-brown speckles on palm of hands and fingers

    I went to see the pharmacist and ask if it could be from Aspirin or Nimotop. She didn’t think so amd said I should continue Aspirin. I take it in prevention because of a transcien cérébral ischemia the doctors think I had about 5 years ago. Now I’m afraid to take Aspirin, and I’m afraid not...
  20. Dechi

    How can we get a wearable 'horizontalometer' invented?

    Smart watches do that. Mine tells me how many hours I sleep and sit down. And move about.
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