Dear All ,

I posted a week ago about my clinic appointment that had not gone well but I had argued my corner and was hopeful it had made a difference .

I had the letter today and it was ok .

He didn't blame it all on stress or emotion or call it functional ( new word for psychosomatic )

He has stated what evidence he sees :- that I have idiopathic angiodema and ertthmatous rashes on my face

and that at more evidance is needed :- to prove anaphylaxis :- BP drop , oxygen level drop or airway compromise

He really wants a high tryptase .

From his perspective that is the case . As he doesnt have all my notes as I have moved area .  I have my 911 (999 ) calls and paperwork coming and am requesting notes from hospital to give the whole story The clinical evidence is there - low oxygen , air problems , flushes ( burning red nettle rash ) , vv high blood pressure .

I have low recorded but on a home BP cuff .

So he has left it open for me to prove it .

He has in spite of him not having evidence of mast cell activation - recommended - vestril ( hyroxizine ), and doxepin .

So he is treating me as if i have

I am starting the vestril on monday Doing one at a time xxxxxxxx

many hugs
Josie

Hi joan ,

Thankyou

Its sinking in . I hadn't realised how much it had worried me untill i got the letter .

I continue to fire fight . I was settled and nearly asleep last night , then my heart went fast , not off the scale , i flushed and itched and strted to wheeze a little - a whistle in my throat . I caught it with orals . My blood pressure went up again - 165 / 103 . I woke up fine . And am ok now

Likely hormones possibly re emergence of infection . I have been on antibiotics for 3 weeks , 2 weeks before that with a days break . If I am having symptoms monday i will be refered to surgery for them to consider what to do . I ahd an abess there last march , which was deep and needed theatre . I have the anesthetic protocol from the TMS site so i can give that to any surgeon.

many hugs
Josie

Hi Joan ,

Thanks Yeah , the balance is hard . I have to listen to my body regardless of wether I like what it is saying or not

The more information we can all have the better as it helps us make our decisions I learn a lot from you too as I err towards medical management and you help me see other things I can do to help reduce my triggers and how much impact they have , esp stress

i hope your well today

Josie

Hi Josie,
Youre smart to realize that listening to your body is the best medicine, to know the what and why and to treat it before it crosses that line. Thats what I have problems with --not being afraid to yell before I actually go into shock. Joan helps me alot with that. Shes so good at giving people courage to do whats best for them Shes a GREAT friend
hugs
me