MY STORY
I would guess my story begins over 25 years ago. I have had this
rash on my general body since then. No symptoms, so I ask my family doctor who tells me, "They look like harmless blood blisters." So I ignored it. Should I be mad that the doctor was wrong? No. Most
doctors are taught ZERO about mastocytosis in med school. He is the
norm of doctors, cant blame him for not seeing something he was
never taught about. So 25 years go by. I am a type A personality, a
Nurse who very often worked double shifts in some very high stress
areas. Before I developed symptoms, I worked a 5 year period of
time, 80 hours a week. Then it started.
First, I started developing hives. Horrible hives, I want to rip my
skin off hives. I did a food diary and nothing matched! Then it
hit me.. the connecting thread was--aspartame! I drank diet drinks
24 hours a day. OK.. so I avoided aspartame and everything calmed
down for awhile.Then I got stung by a scorpion and all hell broke
loose symptom wise. I didnt connect the 2 at first, but here I was
having hives almost weekly. It wasnt long until those hives
appeared with angio-edema (my face and hands swelled badly). I
started to blackout too--These were my first episodes of shock. I
always thought it was something I ate, so I made lists of what I
had just before I went into shock. I kept benadryl and epi with me,
I was scared though. Scared to eat, scared to drink, scared to
touch anything.
It wasnt long until I went into anaphylactic shock again (for the
3rd time). I was extremely upset. Thankfully, the ER doctor who
treated me, was the same one for the last 2 episodes. He is an
absolute angel with such a great bedside manner, I was scared and
asked him, "I feel crazy, I have a list of over 30 things I am
allergic to. That doesnt make sense. Is there any disease where my
body could think I was allergic--but Im not and my body could react
as if I am?"... His answer changed my life. He said, "Yes, your
immune sstem is going crazy, thats why youre in a cycle of shocking
every 2 weeks. We give you steriods that make your immune system behave, you take about 7 days of steriods after you go home , then one week later you go into shock again when all the steriods are out of your system." If it wasnt for this Dr, I dont think I would be alive now. Most Drs know NOTHING about Mastocytosis. Not only did this Dr know, he took the time to talk like a caring human being to me. After being a Nurse for 34 years and after having this disease for a year (that I know of)... Ive found most Drs want a simple explanation, dont like complex cases, want a diagnosis in one test and couldnt care less what happens to you when you walk out that door. Sorry... expecially when Ive been a nurse for so many years and always went out of my way to act loving to my patients. Dont tell me my symptoms are all in my head and expect respect in return...Expect me to think that someone is NOT doing their job and that they picked that work field for their ego, not for helping the human race. So much for my lecture, lol. I adore Dr J.. and always will.
Anyway, I went home and scoured the www. By that time I had gone
into shock at lease 5 times in a short period of time. I found only
1 disease that had all my symptoms PLUS Idiopathic Anaphylaxis I
was amazed!! Not only did my general symptoms fit, I had the UP
rash! I HAD had it for many many years! Suddenly my life was making sense to me. Next I started looking for a Dr who was knowledgeble in in this field. I realized VERY quickly that I had a Rare disease and very few Drs had even heard of it. I found ZERO Drs in Florida who were expert in this. I found ZERO Drs withn 2 days driving distance in it! hat I found was, there is only a handful of experts in this disease WORLD-WIDE! I knew I as in real trouble. My
Anaphylaxis happens without warning and advances very quickly to
near death. I live 38 miles from the nearest hospital and by the
time I get there, they are prepping me for a heart attack, because
I pass throat constriction, go into angio-edema and cardio vascular
collapse and I have NO blood pressure. This isnt a normal scenario
for most Masto patients, I dont want to scare you--but we are all
different and must be prepared for our own specific progress when
we go into shock. I needed help--and quickly! Who do I go to?? No
Drs knew about it... no-one I talked to knew about it. Im a NURSE
and didnt know about it!
I went online... googled Mastocytosis and found only 2 support
systems... The TMS email list and this forum. 2 choices thats it! I
joined both quickly and yelled for help. One person had the
sympathy to email me and try to calm my fears. I had no idea, HOW
do you treat this? HOW do I avoid anaphylaxis?? Give me
information!! She did.. She told me which medicines she was on,
which meds most masto patients take. Now this is NOT the usual way
people get help, find out which meds to take--you would make an appt with your family dr or an expert....but when you are in a life
threatening situation, and there is NO ONE to help, rules go OUT
the window. Its either that or die while waiting to see an
expert--and beleive me, it can take years to get to an expert!
I saw that the list of what she was on was over the counter meds--
antihistamines. I bought it... and started taking 1 of each a day..
immediately I felt better... my flushing was much less. My stomach
stopped hurting and my nausea and vomiting just about disappeared.
I was sooooo thankful!! Was this the exact dosage of meds for me??
Of course not. I had to increase some and buy some others. The
truth is, even though we have so much in common as Masto Patients,
we are all different too. Alot of meds are by trial and error with
Mastocytosis...we learn quickly to only try ONE new med a day. We
learn that your body makes natural histsmines (our enemy) and is at
its highest about 2 to 3 am. (so never try a new med at night).
We learn that Masto has different categories and that may effect
which meds you take...Serotonin---alot of Masto patients are either
too high or too low in this.. It meant I couldnt take Doxepin even
though it helped other people with high Seritonin levels.
Salycylates (aspirin) ?? Many Masto patients are sensitive to
them.. Some arent. It makes a different because some masto meds
have that in them, so you need to know if you are or are not
reactive to them. Especially if you have high Prostaglandins--which
alot of Masto patients do--its treated with aspirin... you better
know if you react to it or not first.
What Im trying to say is, as patients with a rare disease, we often
have to do what is best for us before we ever get to see an
expert.In the meantime, we experiment in small ways--with the help
of our primary doctors, who usually freak to have a patient like
us. IF we are lucky, we find a Dr who will consult with an expert
by phone. And the handful of experts world-wide are over-worked and in great demand--and are pure angels.. dedicating their lives to
helping us and future masto patients. I cant say enough about them.
I adore them--they are my HEROES!
Until then, do NOT let an MD tell you that you are crazy--thats Dr
talk for, "I dont know and I dont have the courage to tell you
that." While you wait to get to an expert, you need a primary
dr...The first Dr you find that says "I dont know but Im willing to
learn" and he/she has a great bedside manner (They actually show
they care for you)--THAT one is a KEEPER!
OK back to my story... my primary dr is a jerk... Im in the middle
of changing to another. He could care less how I suffer, if I live
or die and it shows all over his face when he sees me. I AM lucky
though, I have a GREAT Hemotologist and will see him for my second
visit on the 28th. I am also VERY lucky because I am a future NIH
patient and they are the cutting edge of Masto Research! They call
me often and take my phone calls, so I dont feel so alone out here
I have shocked 11 times in 14 months. This isnt the norm for most
Masto patients but until I make it to NIH... I will be safe,
because THIS forum and that one girl who shared her info with me,
pointed me in the right direction.. where to go, what to do until
then. It is ALWAYS best to talk things over with your primary Dr..
but when you dont have that option...you MUST become your on expert about Masto, your symptoms, what helps and what doesnt help. Thats what we are here for.. to fill in the gap. point you in the right direction and give you a shoulder whenever you need one
Youre here with us now... youre gonna be fine
Hugs to all,
Ramona
PS until you get that expert audience, do this!
1)keep a food/activity/how you feel diary
2)Read the list of food that has Histamines in it--and avoid them
like the plague! When you are more stable, you can add one back a
day, testing to see if it reacts with you (not now).
3) Talk to your Dr and nake sure you have an order for "Twins" 2
epi pens and some Benadrl--take them with you everywhere you go.
4) look at the expert Dr lists and get an appt! If you need to
drive 4 hours, do it!! After that visit the expert ill ork ith your
primary dr by phone, email fax etc.
5)Look at the thread about putting together an emergency notebook
6) Look at the thread of emergency protocols before any medical
procedure--print it out and keep it near.
7) Make sure you know about the other things that can
Trigger" you, like preservatives,chemicals, fermented foods, aged
foods, alcohol, processed foods, and NO leftover foods (and more).
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Ramona, MY STORY (Read 3393 times)
