TCP

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About TCP

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  • Birthday September 12

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    Female
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    UK

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  1. That's great - I just wish there were more of them around.
  2. I found several neurologists useless about the dysautonomia and neuropathic pain. The cardiologist helped me, but only one out of the three I saw as he was also an electrophysiologist. Some people in the UK have seen dysautonomia specialists in London.
  3. TCP

    first rheumatologist appt

    Yes, the had the adrenalin rushed for years. It's worse when I'm anxious. I always wake up dizzy, sweaty and nauseated.
  4. TCP

    first rheumatologist appt

    Yes, the weird things that can be done with EDS joints! I do know of some people that cannot do any of these things on the Beighton Scale but have still been diagnosed with EDS as they have other features, like stretchy veins (I do that is why the blood pools), also Small Fibre Neuropathy (I have that), Mitral Valve problems, Autonomic Dysfunction, IBS, Gastroparesis and POTS etc. As I said they are all linked. Hypermobile EDS doesn't show in blood tests as there's no genetic marker (none found so far). Many people get diagnosed with arthritis as the joints seize up with age and others dislocate all their lives. I haven't had a bad dislocation for years although my knees are wobbly. One friend never dislocated and she knows she has EDS now and her kids are hypermobile, have POTS symptoms, allergies (Mast Cell issues) and Autism (all are connected). My family all have allergies/intolerances and IBS and spine problems. I tell my cardio the links and he's very open to looking into other links and conditions. He is a good doctor and I know many have closed minds and only concentrate on their own field of expertise and aren't interested/knowledgeable in any other area. The neurologists had very closed minds and would not help much. Yes, it is bad luck and now I have a pituitary tumour which is just great! I clean eat now, no dairy, gluten, sugar and processed food. Low carb. I follow Yasmina Ykelenstam's advice on diet which is low histamine and helps with gut issues (mast Cell). Light exercise and good relaxation help me. I hope you can find some answers, too. All the best and keep us posted.
  5. TCP

    first rheumatologist appt

    Hi. I'm sorry to that you have so many things wrong with you from your comprehensive list. Don't dismiss any of that. I have the connective tissue disease Ehlers-Danlos type 3 the hypermobility kind. I had some dislocations in earlier years and then other aspects of health came up, like endometriosis, heavy periods, problems with my spine etc. After Epstein Barr Virus (as Glandular Fever) I got crippling chronic fatigue and that's when the autonomic nervous system started playing up. Decades later I suddenly developed POTS and Small Fibre Neuropathy. I didn't get diagnosed with EDS until I was 53 and POTS when I was 55! I am sure that I have Mast Cell and Histamine issues because of the intolerances to meds, food and toiletries/cleaning products. All of these conditions are linked. I also have a twisted spine, tilted pelvis and degeneration at lumbar cervical spine. I have a pronounced (non-fatty) hump on my upper spine. I have numerous other issues that are too many to list here. You have some mitral valve prolapse which can be linked to EDS and your blood vessel abnormality, maybe there's a link there, too? Did your rheumatologist examine you thoroughly? Did they check all of your joints according to the Beighton Scale?
  6. TCP

    POTS and low blood sugar.

    That's very true. I currently have a pituitary tumour and it's messed up all my hormones. Yikes!
  7. Both my TTT's were with Propranolol (1st) and Ivabradine, the second one....the cardio still diagnosed POTS as I was so symptomatic.
  8. Yes, initially my BP was in the low side and over time with meds it's increased.
  9. TCP

    POTS and low blood sugar.

    I've had this problem for years since I had EBV (as Glandular Fever which triggered the autonomic dysfunction which was misdiagnosed 8 years later as ME/CFS). If I exert myself I get sugar level drops and changes of temperature are also implicated for me and plenty of hand trembling. I generally have to eat something which is hard as I don't do sweet stuff or carbs, so nibble on some salty snack.
  10. TCP

    Exciting new POTS research

    Yes, that is right, in SFN some of the nerve endings are absent. Utter absence of these nerve fibres is indicative of advanced small fibre neuropathy. I have autonomic dysfunction, POTS and widespread SFN. I have permanent tachycardia.
  11. TCP

    Exciting new POTS research

    You've actually described Small Fibre Neuropathy which is present in people with Autonomic Dysfunction, Ehlers-Danlos, POTS etc. There is small fibre loss and it affects the organs and skin. There's a lot of information about this online and many research studies.
  12. TCP

    Position and heart rate

    I can't lie on my left side as it makes me feel very unwell, plus I have pelvic adhesions that side and a bent spine. Yes lying on the left side shifts stomach gas and moves bowel movements along. Congrats on the baby x
  13. TCP

    Panic after eating

    I've had this for years and now have smaller meals and cut out sugary foods and reduced carbs. The gut makes the whole of the nervous system go haywire. I know I used to feel awful after eating. Smaller meals definitely and avoid gas generating foods.
  14. Hi! Hi! I ordered mine off eBay and they were surprisingly good. I bought from proper medical supply companies or chemists.
  15. TCP

    Trouble with bleeding?

    I hope you are feeling better now? I often have issues with blood test results and being slightly anaemic. I have put it down to my losing some blood in my urine as every time I have a urine test there are traces of blood in it. Also I am on Gabapentin and in the blurb it says that blood test results can be affected by taking it.