Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> My road to diagnosis - not there yet http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1299884975 Message started by Josie on 03/11/11 at 11:09:35

Title: My road to diagnosis - not there yet
Post by Josie on 03/11/11 at 11:09:35

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

Title: Re: My road to diagnosis - not there yet
Post by Joan on 03/11/11 at 18:03:10

Hi Josie,

While that may not be as much as what you wanted, it's really a good start! Sadly, the road to diagnosis is not short and is full of potholes. It took me 15+ years! Luckily, it won't take you very much longer, and I'm so thankful that he at least is now taking you seriously and prescribing you the meds you need.

Hope this takes some of your stress away! Hope you can have a relaxing weekend!

Title: Re: My road to diagnosis - not there yet
Post by Josie on 03/12/11 at 05:55:27

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

Title: Re: My road to diagnosis - not there yet
Post by Joan on 03/12/11 at 18:03:45

Hi Josie,

You seem to be doing everything right. Hope you don't need surgery. It's easy to underestimate how quickly infection can throw us into a flare up, but you recognize that as a possibility. That's the game. First figuring out your triggers, and then anticipating them so you can medicate before they become a serious problem. Tricky sometimes.

Have appreciated the posts you've made explaining some of the medical aspects of the disease. I often learn something new from them.

Title: Re: My road to diagnosis - not there yet
Post by Josie on 03/13/11 at 01:13:09

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

Title: Re: My road to diagnosis - not there yet
Post by Joan on 03/13/11 at 15:49:33

I struggle a lot with inflammation, especially in the muscles and connective tissue. It seems to move around. One month in my right hip, then the next in my left shoulder, and then.... I've been trying to take a muscle relaxer this round and started with 1/4 pill which made me feel a little strange, but didn't help the muscle. So, I'm up to 3/4, and that might be helping some, but it revs me up a little, so I can't take it at night. Do you know of any other muscle relaxers that are safe for masto patients?

Stress is so hard to limit! There are so many uncontrollable variables. I do think yoga has helped me a lot with that, but it's certainly not a cure-all. And some days, there's just a lot that has to get done and much of it can't be anticipated.

Title: Re: My road to diagnosis - not there yet
Post by Riverwn on 03/17/11 at 15:59:06

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