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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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Search results

  1. M

    Probably Sjögren's Syndrome all along.....

    I can't answer that PDXhausted as I had a hysterectomy a few years ago and therefore out of that loop now. I know that doing too much definitely affects me. For instance at the moment we are getting ready to go overseas for a wedding. Those kinds of things are stressful for me now. A thousand...
  2. M

    Probably Sjögren's Syndrome all along.....

    Yes. For quite some time I experienced the rapid heart rate which made me feel totally horrible. Drained of energy etc such that one wanted to just lie down.......which I guess was natures way of reducing the symptoms. After a doctor did the standing test (I haven't had a Tilt Table test) in...
  3. M

    Probably Sjögren's Syndrome all along.....

    Very similar except I have never had the last three symptoms you mentioned - thankfully! The twitchings (fasciculations) were dreadful in the first two years. Probably about 30,000 per day. Now I only get the odd one or two. That's what mystifies me! Why do some symptoms resolve after awhile?
  4. M

    Probably Sjögren's Syndrome all along.....

    Justin, in 2006 I was diagnosed with a Mycoplasma Pnemoniae infection. Despite several courses of antibiotics (Doxycyclin) the cough persisted and the Myco.Pn. results kept coming back positive. After eight months of relentless coughing I went to the emergency department of my local hospital and...
  5. M

    Autoimmune Autonomic Ganglionopathy

    Thank you Jonathan, KangaSue & Gingergrrl for your responses. Jonathan, it is complex and admit most of it is beyond my current understanding. I agree with you that the main ANCA's are neg. It is what is happening behind the scenes of that ANCA test which is a bit puzzling. Yes...and as you say...
  6. M

    Autoimmune Autonomic Ganglionopathy

    As I have only had a short crash course in AAG since KangaSue mentioned it to me a couple of weeks ago, I hope someone may be able to shed some light onto the following! While reading the AGIDE website particularly the Autoimmune Dysautonomia page there is a list of various tests on offer. Some...
  7. M

    Probably Sjögren's Syndrome all along.....

    I'm sorry you feel so 'down'. I think many of us know the feeling of abandonment when it comes to clueless medical personnel. Sometimes you hit upon a gem....and in that respect I have been blessed. My Endo is very energetic and enthusiastic. During our consultation yesterday for example, she...
  8. M

    Probably Sjögren's Syndrome all along.....

    Thanks for your comprehensive reply. I have had a couple of busy days hence my delayed response. Just briefly I had an interesting conversation at my appointment today with my Endocrinologist. She is one of these doctors who looks at the 'whole' person in her management of her patients. After I...
  9. M

    Probably Sjögren's Syndrome all along.....

    Oh something else! Is your gut motility terrible also? How does it work having a PEG when (if) your gut absorption/motility is poor. I'm sorry when I mentioned 'pump', I meant the gastric pacemaker. I was definitely having brain fag when I wrote that but I couldn't remember the name. I actually...
  10. M

    Probably Sjögren's Syndrome all along.....

    I've just read your Saturday message....it either wasn't showing up when I posted my previous message, or my brain fatigue is quite bad today! Interestingly I have been seeing Prof Geof Hebbard for about five years. He is awesome. Incredibly humble. Bulk bills even in his private practice...
  11. M

    Probably Sjögren's Syndrome all along.....

    KangaSue, I don't believe I have Adies pupils as no-one has ever said anything is sluggish or unequal with my pupils. Otherwise I was reading the Mayo AGIDE Laboratory site and it was a bit scary as it sounded like so many of the symptoms for AAG are what I have had. Can Gastroparesis improve...
  12. M

    Probably Sjögren's Syndrome all along.....

    Yes KangaSue, I am in Melbourne.
  13. M

    Probably Sjögren's Syndrome all along.....

    KangaSue. How would you ever get any doctor to test for this? It seems so obscure. What specialty of medicine would be most familiar with and likely to acknowledge that a3-nAChR Ab is worth testing for? I will do some reading on it. Sigh!! Can my cognitively impaired brain get my head around...
  14. M

    Probably Sjögren's Syndrome all along.....

    KangaSue I'll read that link this evening. Can you tell me what antibodies are positive in AAG?
  15. M

    Probably Sjögren's Syndrome all along.....

    That is definitely depressing news Jonathan! At least I have had good diagnostics and treatment for the individual symptoms which make up the whole....like Gastroparesis - motility testing (GES) and then treatment with prokinetics etc. Pulmonary symptoms - great diagnostics and under a very...
  16. M

    Probably Sjögren's Syndrome all along.....

    Thank you Charles for the information you posted. As I think I have mentioned to someone else, I have a Rheumatology appointment scheduled for 19th May. I am also on a cancellation list in the event an earlier time slot comes up. Hopefully this Rheumatologist is 'on the ball'. I see my...
  17. M

    Probably Sjögren's Syndrome all along.....

    Marco until six months ago I never sweated/perspired, then about Oct 2015 I started to sweat profusely. Literally dripping off me continuously. I needed to take towels with me when I went out. I had been puzzled by this then I realised a few weeks ago that this was possibly just another...
  18. M

    Probably Sjögren's Syndrome all along.....

    Jonathan's question about P.E.M. brought me back to a topic which I have not thought about for four or five years. Approx five years ago my M.E./CFS doctor started me on low dose Propranolol which is a beta-blocker. He prescribed it for orthostatic intolerance (OI), more particularly for...
  19. M

    Probably Sjögren's Syndrome all along.....

    Hello Maria, Thank you for your response. It would certainly be amazing if I could start some treatment to help this condition (if indeed it is Sjögren's). My appointment for the Rheumatologist is 19th May but I am on a cancellation list should one come up before then. A question I'd like to...
  20. M

    Probably Sjögren's Syndrome all along.....

    For the first five years I believe I suffered from PEM. It was quite scary (not telling you anything no doubt ) when one couldn't get out of bed for eg. two, three or more days, I used to think I hope this doesn't last forever .....I want to get back into living....such as it was, I have so much...
  21. M

    Probably Sjögren's Syndrome all along.....

    Hello all, I have returned to Phoenix Rising after a five year absence only to find that there are no specified autoimmune forums anymore...but no matter.....so hopefully the Connective Tissue forum will suffice. Since 2009 I have had the 'Fibromyalgia' label (given by a Rheumatologist), which...