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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. K

    My Poor Man's Tilt Table Test Results!

    Agreed and I just got diagnosed so it's gonna be another long fight on our hands! All my relatives were very happy when I got diagnosed and I asked what for? "So that you can get better now" they said, but I'm pretty much doing all the things that are recommended as it is. Before I could see the...
  2. K

    My Poor Man's Tilt Table Test Results!

    @Sea The doctor who received my results is the one that referred me but also the one that was insistent it was all 'anxiety' and nothing more. Will be interesting to see his reaction again. Well considering that this is now the second diagnosis I've received that he has dismissed/ignored...
  3. K

    My Poor Man's Tilt Table Test Results!

    @Tired of being sick Thanks for that information. I actually used to get livedo reticularis as a child whenever I was cold. I would get very distinctive patterns. I remember referring to them as "spider webs" Thanks again for the links, I will dive into them asap! @Sea Thank you Sea. It's...
  4. K

    My Poor Man's Tilt Table Test Results!

    An update: Dr E Hagen and her team appear to specialize in dysautonomia caused by spinal cord damage. I mentioned my rheumatologist is waiting for clinical evidence (two parts of the spine have to have damage I believe) as I'm investigated for Ankylosing Spondylitis (father has it). Since my...
  5. K

    My Poor Man's Tilt Table Test Results!

    NHNN seem to be working very swiftly in seeing patients as quickly as possible. Even though I was being told by the clincal scientist who carried out the tests, the nurses and the receptionist that the waiting time to see a doctor is on average about 9 months. I have an appointment next month...
  6. K

    My Poor Man's Tilt Table Test Results!

    Okay, reporting back. I underwent the 60 degree tilt table testing and symptom wise I mainly had pain in my feet which caused me to shift the position of my legs every 5-10 minutes which might've thrown off the results a little but it was unbearable so I had to do it. He didn't seem bothered by...
  7. K

    My Poor Man's Tilt Table Test Results!

    My apologies for not noticing the chat notifications. I didn't even realize it until you just mentioned it in your post. As for where I live, I'm in the United Kingdom more specifically London. I'm not so sure these specialists are going to let me repeat the TTT more than once. I've literally...
  8. K

    My Poor Man's Tilt Table Test Results!

    Wow that sounds bloody awful, but to be entirely honest I'm not too surprised. I took the liberty of reading the reviews posted about this hospital and they seem to receive quite an unhealthy amount of negative feedback. I really really hope my GP did not write in the referral that he believes...
  9. K

    My Poor Man's Tilt Table Test Results!

    Hey Rising Forumers! Thanks very much for the links and helpful suggestions. I've come to report that I've finally gotten an appointment with the NHNN Hospital in London that deals with Autonomic issues. What's strange though is I decided to attempt another Poor man's tilt table test and the...
  10. K

    My Poor Man's Tilt Table Test Results!

    Well today was the day I had the appointment with a Psychiatrist. Long story short, I have no major depression or generalized anxiety but she suggested (well she seemed pretty convinced) I had a condition that I can't remember the name of, but from what she said, it meant that 'I have an...
  11. K

    My Poor Man's Tilt Table Test Results!

    Oh my god. If someone had told me that about my spine I'm not too sure how I'd have reacted in that situation, especially when in your early 20's. As I understand it, these 'disks' in the spine function similarly to a suspension system in a car? So every movement has to be with the utmost care...
  12. K

    My Poor Man's Tilt Table Test Results!

    @Sea Ouch sounds complicatingly painful. Must not be very easy to move around!? Did the level of damage you have take a very long period to occur or was it relatively quick? Yeah, like you said it's just mainly causing me a huge amount of discomfort but doesn't need any emergency appointment so...
  13. K

    My Poor Man's Tilt Table Test Results!

    @Sea Not a problem, I wouldn't expect anybody to read all of it heh. In regards to spinal issues I had an MRI scan 6 months back and I was told I had a small amount of damage in my sacroilliac joint "sacroillitus". Although for years I've had permanent stiffness of the whole back and when...
  14. K

    My Poor Man's Tilt Table Test Results!

    @Sushi No I haven't tried any of the sort you mentioned but I will check them out, thank you! Just wondering what would be causing this? I feel like whatever is going on is progressive. Just like I mentioned in my opening post that I started off with just the severe abdominal bloating and now...
  15. K

    My Poor Man's Tilt Table Test Results!

    Thanks everyone! Would it help my case if I went to see the psychiatrist? Perhaps an opinion of my mental state from them would finally drop the case of anxiety/stress that the doctors like to refer to? I've also got something else I'd like to ask you knowledgable folk. For a while now when I...
  16. K

    My Poor Man's Tilt Table Test Results!

    @SOC @xchocoholic Thank you for the replies. Well like I said in a previous post I'd post back in regards to any movement on a referral to an autonomic clinic by my GP or any form of investigation. Well I booked a double appointment so 20 minutes rather than the usual 10 (does anyone even get...
  17. K

    Any thoughts on my dropping BP and temp please?

    @Helen Interesting post I must say. What exactly are we looking for in the youtube video? My pupil behaves in exactly the same way like the video. I tested using the flashlight. Is that what I'm supposed to be noticing in that video? I do seem to have a problem with low blood pressure just like...
  18. K

    My Poor Man's Tilt Table Test Results!

    @Sushi Thank you for the reply and warm welcome. Hopefully one day we may all reborn as healthy individuals (phoenix). As to where I reside, I'm living in London, Great Britain. I'd be delighted to hear of any suggestions you may have! @Hip Oh yes, I'm sure I overdone it and I know I have as I...
  19. K

    My Poor Man's Tilt Table Test Results!

    Firstly a little background information... I'm now 24 but my symptoms first hit when I was 19-20. The first thing I began suffering with was chronic abdominal bloating/swelling/distention and my legs felt heavy, so heavy infact that I would move forward by sweeping my feet rather than lifting...
  20. K

    My Lactulose Breath Test Results (SIBO)

    I'm hoping someone here would be able to help me interpret my results. I have a picture of my results including a graph to make it easier!