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  1. I haven't had the burning for ages. Realised I was getting this when my body was reacting to something which was toothpaste with sls in it. It wasn't just the burning, it felt like my body was attacking itself. They got no answer for this. It could be something you're coming into contact with
  2. How do you find it helps? Is walking easier? I struggle to walk far, I get so exhausted.
  3. It really is ridiculous that they are making you feel this way. I know I said that saying "thee who feels it knows it" but a doctor should believe you, they shouldn't have to feel it. Another thing is when you've tried everything and it don't work they think you're the problem. Problem is nothing works for some people. They still don't understand pots completely or mcas to this day. You know most docs just think u only feel crap when u stand up and then when you're back down everything is all good. Pots comes with so many symptoms. Your body is just not functioning properly....got sod all about your mental health causing it. Any mental health problems is off the back of pots and sick of feeling like death all the time. Nothing worse than feeling people don't believe you and feeling you have to prove yourself as its impossible. They don't call it the hidden disease for nothing! Been a lot of news articles lately about people developing pots because of covid. Maybe if its a more known disorder docs make takes us more serious
  4. I get this. When I stand up its like a head rush and whooshing in my ears. Happen more when I haven't got my compression socks on. Also when I turn on my left said in bed it don't stop whooshing
  5. Don't he know passing out is to do with pots. He should know this at the very least.
  6. I also had a miscarriage around that time. I took it really bad and had ocd after that. Wonder what they've put on my file. Not fair to bring any of your past up.
  7. I'm so mad he spoke to you like this (not surprised) its just too common 😒 I get what your saying with things on your file, its like they love to see this as they must think this will make my life easy ill blame mental health. You can't even get people to begin to understand how all this effects you. Its like that saying "Thee who knows it feels it" you have to feel what I'm going through to truly understand. Problem is they know a little about a lot, so pots probably only know 2 of the MANY symptoms, mcas 2 of the MANY symptoms. I remember on the phone I said to the neurologist I've had to get around in a wheelchair (not in one now but certainly feel like I need to sometimes) and she went quiet. I know she was thinking I don't need to be in one. Who in their right mind would want to willingly be in a wheelchair age 37 yrs old if they didn't need to! You have to complain. He needs to understand what he said is so wrong.
  8. Doctor said to up the salt tablets to 2 tablets 3 x a day. If this don't work then try fludrocortisone. I find taking just 2 salt tablets dries my lips out and my face. Don't know how I will feel taking all those
  9. I have had major problems with my eyes and balance. They now think its something to do with the semicircular canal. Which wouldn't be a surprise as I've already had surgery in that area. I think I must still have a hole or something there.
  10. Wow 15 yrs! Well thats reassuring. I can only try and give it a go.
  11. I was thinking of trying fludrocortisone/florinef but reading about the side effects it sounds brutal. Also it says do not have any vaccine whilst taking fludrocortisone as it can effect brain and spinal cord. Common side effect heart failure! Its just seems to have a lot of very bad side effects which will make me worse off 😕
  12. My problem is I can't lose weight. I've been trying to lose weight for 5 weeks. I've dropped my calories and exercising (only 10 mins a day). Im a size 12 so not a lot to lose but can't even shift a few pounds
  13. Yeah I'm expecting mine to be negative. Because my lips don't swell, get hives etc I don't think he thinks I could possibly have mcas. Its really weird with me because eating nuts causes me to have seizures and he was kinda scratching his head as why this would happen. Glad you're going in the right direction now.
  14. What test did the immunologist do? Just seen one recently and had tryptase tested. Still waiting for results 7 weeks later! Wasn't reacting at the time so don't know if he's just gonna go off that
  15. I think you're a really strong person as you've been through so much. Just keep riding the storm...better days soon will come. Looks like you get sun, here it rains and rains and rains. Love the lizard pic, I love lizards (I have 3 different types)
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