doggus

Very interesting. Racer - you said you felt better with a fever. I know exactly what you mean - psychologically i am much better when I have flu - all my OCD and anxiety disappreas. My doctor suggested that this was because I was focussing on the illness but the OCD wanes even before I KNOW I am ill!

Aaraon - PLEASE could you pm me too? I am in the UK. I actually posted here a few months back asking if anyone in the UK had managed to get a MCAS diagnosis as I am struggling to get one. I have POTS and EDS. Your immunologist sounds clued up - and congrats (though sorry) on getting a quick diagnosis. I have had terrible experiences here with top allergists claiming I just have anxiety before finally getting a POTS diagnosis but I would love to nail down a MCAS diagnosis too. If you know what i mean!Thank you.

So interesting. Is the program easy to do at home? Does it take a lot of time? You see, I agree Godsgal that basically my limbic system is up the creek. Because drugs are so hard for me to take due to mast cells am desperate to find something non drug. This would fit the bill. Is this unique does anyone know - is dnr system the only one offering this?

Godsgal - am really really interested in your neuroplasticity proposal. Can you do it at home? What programme did you buy? Did it help your mast cells too?

Oh I have this all day anxiety too. I so hate it. I try and decribe it to friends and family as physiological rather than in my head but I know they think it's me stressing out. And yes my teeth are ground down too! Has anyone found anything non-drug to help?

Gosh I thought I was the only one that felt like this. It's so refreshing coming here. I can get myself into a state about the school run, thinking I might have a crisis out and about.

I have had all the complement tests - I have zero complement 2. I also had high CD3.

Issie - I so identify with you. I feel like my nervous system somehow went wrong after the hyst and left me in fight or flight mode. This intensifies the anxiety and OCD. Little things become SUCH a big deal. I can have a mast cell attack caused by anxiety over whether my son's coat is clean enough for school tomorrow! I am a highly sensitive super bright (sorry to be cocky!) woman, always have been. I take things personally. Issie - have you found anything that helped? I am on mast cell stabilisers and they have helped a little but not much. I find drugs to be pretty intolerable. Have you found anything non-drug helpful? I want to turn off my nerves!

I can only eat about five or six foods and even they make me feel bad and give me tachycardia. I used to be able to eat absolutely anything. Songcanary you sound like me - I had fibro diagnosed before I got POTS etc. Sallysblooms - what worked for you to make you less reactive?

This is sooo interesting. I have POTS, EDS 3 and mast cell disorder all of which came in almost overnight after a hysterectomy. (Though looking back I already had fibromylagia so maybe they just got worse overnight). I also have OCD which has become MUCH worse with this condition. (So the idea that OCD is auto immune resonates). I was given a thorough going over by an immunologist and though everythign was negative including ANA they did find I have no C2 complement, which implies I have an auto immune disease such as lupus. Hmmm.

Do you know if you can take if it if you have MCAD as well - does it increase histamine?

Hi Tinks - yes I do - saw Prof Mathias and have got POTS and EDS III. For various reasons I am not able to get to London for a while and wanted to explore whether anyone has found POTS docs down south a bit.

Hi everybody - I wondered if there were any POTS doctors in the UK outside London - I am in the south of England. Thank you all.

Oooh thank you so much Mack's Mom. I am going to that forum IMMEDIATELY!

Hi everyone - I have been diagnosed with POTS and EDS 3 by Prof Mathias. I am also pretty certain I have a mast cell disorder though when my tryptase was tested it was 11 (has to be over 20 for mastocytosis here in the UK). My big issue is food - am down to only a few foods and even they cause major reactions - flsuhing, tachycardia, faintness, itchiness, severe muscle and joint pain, you name it. I also get angioedema. i am having a real job getting anyone to link the three diseases and get me a MCAD diagnosis. i went to see the top mastocytosis doctor in london and while I am sure he is great for that he doesn't really 'do' MCAD. Has anyone had any success here in the UK with mast cell side of things?