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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. F

    Swallowing

    In the last few days I've now began aspirating on any fluids I live on and even my own phlegm. I'm in a dire state swallowing wise. I've been tested for everything under the sun including motor nuerone and MS, but have yet to find anyone outside of those worlds with swallowing symptoms so...
  2. F

    Swallowing

    Hi All, Thanks for you posts. Talking about it does help as I find I'm on my own with this quite severe issue a lot of the time. I don't think EDS type III (hypermobility type) has any genetic markers - at least that is what the professor told me. However, he did mention that there is a...
  3. F

    Swallowing

    That is interesting. I guess whether you are diagnosed with ED/ME/POTS depends on who you see. The ED Prof noticed stretch marks, stretchy skin etc that I'd always had. Are you on brainfog group TCP36?
  4. F

    Swallowing

    That's what I have too. Feels like the kneecap is out of place a little sometimes.I don't have much joint issues at the moment. The swallowing is my main symptom, so I was surprised at the apparent diagnosis. The chap who diagnosed said ME and ED are linked (perhaps he means they often...
  5. F

    Swallowing

    I just thought I'd better post an update: After exhaustive testing, and no improvement in my swallowing, a rather preceptive neurologist sent me to a person in London who is in the process of diagnosing me with Elher Danlos (hypermobillty type). I had not heard of this nor realised it could...
  6. F

    Testing for Difficulty Swallowing

    Hi Andrew, I think an manometry test may help with find out the swallowing issues? But this needs to be organised by a specialist. I have bulbar symptoms, muscle twitching and can only swallow liquids (had ME for some years). I have had 3 EMGs to rule out various neurological disorders. I...
  7. F

    Swallowing

    I just wanted to add that I had the Esophageal Manometry this week. It wasn't so bad at all - I did get him to spray lots of aneasthetic down my nose thought so perhaps that helped. No gagging. In fact the hardest bit was not swallowing when they were taking readings. The person doing the...
  8. F

    Swallowing

    How are you doing Anna? Please reply and let us know if you around.
  9. F

    Swallowing

    Hi Anna. Lots of people with M.E. have intermittent swallowing issues. They seems to get worse if you are tired or think to hard about swallowing. My issues, described in this thread, are always there and I am unable to swallow solids any day no matter how I feel. This came on 2 years ago -...
  10. F

    Ehlers Danlos OR joint Hypermobility Syndrome

    IF (and I mean _if_ as I'm not sure myself, maybe in denial) I have EDS then its down to two people who discovered this - my excellent neurologist who has a reputation for not leaving any stone unturned, and the Professor who he referred me to, who, upon examination, seemed fairly convinced its...
  11. F

    Ehlers Danlos OR joint Hypermobility Syndrome

    Just a quickie - I appear to be in the process of being diagnosed with EDS type III. I've had M.E. for 10 years, but my swallowing problems got so bad last year that I have been on soups since. They now suspect I have EDS.
  12. F

    Swallowing

    Hi there Shell. All sounds very familiar. Makes me wonder if my problems are in fact M.E. after all. I seemed to have great problems finding anyone with severe swallowing issues like myself (you've probably come across my many messages about swllowing issues), which have come on over a period of...
  13. F

    Swallowing

    Hi Andrew. I suspect your swallowing problems will ease, but let the docs keep an eye on you. I survive purely on liquidised soups and it has kept me going. After a while you get used to it. They suspect a connective tissue disorder may be the cause of my issues, but I've got to have the...
  14. F

    Swallowing

    An Update Hi All, Quite a lot has happened since my last post.I'm still not diagnosed with anything (other than M.E.) however. 1. My swallowing has got worse. On thin liquids only, and they are a challenge. 2. I'm seeing what I think is a good neurologist, who knows about M.E., but also...
  15. F

    EPD or LDA (enzyme potentiation desensitization or low dose allergens) for MCS

    EPD Helped A lot I was unable to eat anything without major digestive issues. I became intolerant (due to M.E.) to just about every food group. Nothing helped, and it got worse and worse. The EPD was a last resort, and despite having been told it would not work by many people for multiple...
  16. F

    Swallowing

    Esophageal Manometry Surely a Esophageal Manometry can't be as bad as a endoscopy?? Had one of those when I first encountered swallowing issues in my lower gullet years ago. Not pleasant, but survivable. I'd hope that the tube is a little thinner? My concern here is that it feels like a...
  17. F

    Swallowing

    Thank you all for your kind replies, particularly Leela for taking such time to write a very helpful message. I am taking notes! Life feels awful right now - swallowing is too hard and tonight even breathing is laboured and too much effort (hence why I'm typing at 4:00am!) I really don't...
  18. F

    Swallowing

    Thank you all for your suggestions. I'm researching each and every one. Went to see the Neurologist last night. One with experience in Motoro Neurone disease. He said, after a thorough examination that I was not exhibiting signs of Bulbar ALS. He said he could do more tests (MRI, EMG) but said...
  19. F

    Swallowing

    It could be allergies I suppose - which have now also got vitamin and mineral difficiencies mixed in for good measure. Interestingly, I tried, foolishly, some crisps last night. They weren't actually potato crisps but those corn based onion rings - thought they'd mush up and be easy t get...
  20. F

    Swallowing

    Thanks everybody. My swallowing issues haven't got any better. On liquids only. I just tried eating a packet of crisps really slowly and ended up coughing for about an hour afterwards. Its down to complan (liquid meal) and soup and occassional ice cream. The weird thing is that I've had ME (or...
  21. F

    Swallowing

    Its ok. I'm of a high anxiety state anyway. When the doc brought up 'MND' in conversation it caused me so much worry I stopped drinking fluids, which made everythimg worse. He then said I hadn't got it he was just chatting about what neurologists do. My mistake. When you then mentioned it I went...
  22. F

    Swallowing

    I am trying to find someone to see about it here in the UK as I type. But there doesn't seem to be anyone listed! You have me quite worried.
  23. F

    Swallowing

    I've just read that speech issues occur in 93% of people with bulbar als. I've not got any speech issues at all.
  24. F

    Swallowing

    I thought the GP said I had that (it was apparently a misunderstanding), and I spent the next 4 days in a real state. My anxiety levels shot through the roof and I ended up in ER. The GP then said he never said I had it and that I certainly do not. But is it possible? I don't have any problems...
  25. F

    Swallowing

    Hi All...first post.... Had ME for aroun 10 years. Started with food getting stuck in chest, then food intolerances, weakness etc. So I'm no newbie! However I currently am having great issues with swallowing (had temporary ones but this times its not gone away, in fact worsened, in...