Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> After clinic today http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1298988647 Message started by Josie on 03/01/11 at 02:10:47

Title: After clinic today
Post by Josie on 03/01/11 at 02:10:47

I have been to clinic today in the hope I was meeting the boss . i didn't I met the underdog !!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hmmmm ,

I was told no further consideration of any mcas / masto etc without a raised tryptase .

Feels prostogalndins will add nothing to what we know .

feels I havent proved anaphlaxis with low blood pressure , despite all my airway symptoms . time to collate all my aperwork to prove it .

I asked about mast cell activation syndrome , i was told they didn't want to jump on a new bandwagon and mis - diagnose me .
I said I understood and that it wasn't a new bandwagon .

He hadn't read my notes before i went in .

So :- he didn't know what brain fog was !!!!!!!!!!!!!!!!!!!!!!!

he will go through everything and have more answers for me in 3 months time . may 21st .

I am going to get my ambulance calls , paperwork , and ED cards collated and sent to him .

I will see the boss next time .

Feeling deflated and that i am going to ahve to contune battling on xxxxxxxxxxxxxxxxxxx

Jose

Title: Re: After clinic today
Post by jbean on 03/03/11 at 12:21:39

Unfortunately, that's the standard run-around with getting a diagnosis for this. Hang in there and keep pushing. You've got to keep at it to get the answers you neeed. We've all been through it. Yes, it is very discouraging, but the sad fact is that you have to push back to be your own advocate when you have something out-of-th-norm going on.

Chin up, you'll get to the bottom of it! ;)

Title: Re: After clinic today
Post by Riverwn on 03/03/11 at 15:09:01

Ohhh Josie, Im so sorry.. JB is right. It just goes to show he ISNT an expert in masto or he would know there are many categories and some do NOT have raised tryptase levels.. tell him to read the WHO crriteria for diagnosis and then remember a NEW one is coming out very soon with new definitions of anaphylaxis...

Im sorry hon, you need to see someone else OR the top dog...(doc). IF he cannot spend 5 minutes listening seriously to you then you shouldnt waste your time and health on him... See who else is in the area... 3 months is ridiculous when youre dealing with life threatening things... Heather has a list posted here of the tests that should be done for ANYONE that is possible masto.. print it out and stick it under his nose!!

In the meantime, do what YOU know is best for YOU, meds etc,.. keep documenting and copies of everything. I got your back girl.... Lemme know which doc to head butt LOL...
Hugs and more
Ramona

Title: Re: After clinic today
Post by missybean on 03/03/11 at 15:42:41

Hang in there Josie! Ramona, you are so funny. I like this spunky side of you!
Melissa

Title: Re: After clinic today
Post by Riverwn on 03/04/11 at 02:25:57

I have to admit, I stole that line (head butt the doc) from Sandi... she cracks me up and she doesnt mince words (which I love). Shes a card and source of great laughter for me :)
hugs
me

Title: Re: After clinic today
Post by Josie on 03/04/11 at 09:39:53

Hi Ramona , mellisa and JB

Thanks . Ive dusted myself off now and am ready for the next round!!!!!!!!!!!!!!!!!

ding ding round 45 xxxxxxxxxxxxx I dont think its as many as that , but yeah , im ready xxxxxxxxxxxxxxx

with being in the chair im better placed for worse damage !!!!!!!!!!!!!!!!!!

I ahve ordered my 999 calls and paperwork so proof is on its way .its so hard when you know the reality of what you are dealing with. But once ive collated I am going to push for an earlier appt . You right 3 months is too long . my throat close comes within 3 mins of my first symptom now so i know hes playing with fire . But he cant see any smoke so to him there is no fire .

Steriods give me longer but they wont prescribe any more , so I am keeping the 30mg of prednislaone I have incase I need it .

Its a case of I am too good at looking after myself .

Since I learnt about masto I have felt idolent systemic fitted . But my tryptase is stubbornly ok . So until I can convince them to do other tests - prostoglandins . the decision is no masto and also No sodium cromulate. I am seriously considering buying it from the states . but i don't think I can afford it . I am on disability here .

hugs
Jose

much love
Jose

Title: Re: After clinic today
Post by Riverwn on 03/05/11 at 05:29:09

GREAT idea of having emergency prednisone.. I keep about 40 to 60 mg.. if I know Im going to shock.. I chew it to make it absorb faster, yell for someone to get a hot drink for me (to absorb faster) THEN I call 911.. and doing this has made those episodes so much less severe, much less life threatening.

You can try Nasalcrom OTC... they should have it in England.. and its pretty cheap--thats what I started on until I got Gastrocrom and it DID help.

Let me know if there is anything we have OTC here that I can send to you over there :) There is more than one way to skin a cat LOL...

HUGS,
amona

Title: Re: After clinic today
Post by Josie on 03/05/11 at 07:18:27

OMG , I use that all the time :-) Thats so cool . My partner says you say because your a nurse :-) I think we just think alike :-)

Thanks I will check it out :-) and yeah I may ask you to do that , allegra is availble over the counter with you now . I had to stop it because it was a big pill with lots of corn starch . My bowel was in pieces and my body started physically rejecting it . Like it was saying no thanks , you havent got the hint with 8 times a day bowel actions and excruicating pain so were going to reject it .

So liquid allegra would be fab xxxxxxxxxxxxxxxxxx Could you check out the other ingredients for me ?????

Ill cost it up for a months trial :-) of allegra and nasalcrom if I can't get it here :-)

Thanks so much xxxxxxxxxxxxxxxxxxxxxxx

many hugs
Jose xxxxxxxxxx