Mast Cell Disorders Forum - Medical Alert Bracelet?

kesasur Tutor Offline I Love YaBB 2! Posts: 64	Medical Alert Bracelet? 10/10/13 at 04:41:54 I am wondering if there is a need for me as a newly diagnosed MCAD patient to have a medical alert bracelet. I thought I remembered reading that "we" should and have it engraved w/ "mastocytosis" since it is the familiar diagnosis and the treatment during an acute episode is the same. What are the general thoughts out there? Thanks! Kelley
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Riverwn

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Re: Medical Alert Bracelet?
Reply #1 - 10/11/13 at 06:35:00

I don't have one yet but, I have an ER notebook that goes everywhere with me and ER/ALLERGY card in my wallet. I put "VERY ALLERGIC PERSON" on those. As a nurse I know that most ER people are going to look for a quick list of allergies, illnesses and putting that on my papers mean they will look for the important things if I cant talk for myself. Most Drs and Nurses have never heard of Mastocytosis and it wont ring a DANGER bell to them when needed. We still have a lot iof education to do out there!
Ramona

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kesasur Tutor Offline I Love YaBB 2! Posts: 64	Re: Medical Alert Bracelet? Reply #2 - 10/11/13 at 10:21:59 Thank you Ramona, This makes sense. I'll get together a list and carry it in my wallet near my license. I can decide on the bracelet later. Kelley
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DeborahW, Founder

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Re: Medical Alert Bracelet?
Reply #3 - 10/13/13 at 14:50:39

I had my specialist, Dr. Akin, write for me an ER protocol on his letterhead. It tells what I have and how to treat me. Then I have written my meds and current doses of those meds on that paper as well.

Dr. Akin told me not to put masto on my medical bracelet, because most medical personnel won't know what that is. Instead, he had me put ANAPHYLAXIS, because that also describes me and they will know how to handle that.

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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: Medical Alert Bracelet? Reply #4 - 10/13/13 at 19:34:08 Good one deb The problem is Thay don't no how to handle true ANAPHYLAXIS that is why people are Dying in front of them ER personal do not know how to recognizes anaphylaxis Without symptoms Thay are overwhelmed by non anaphylaxis with symptoms of allergy s
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redbird

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Re: Medical Alert Bracelet?
Reply #5 - 10/14/13 at 06:05:45

Hey Peter...I don't know where you live but if it were me I would gather info in regard to masto and anaphylas and ask for an appt with the ER director of the hospital that I would be using. if that person would not meet with me I would then contact the CEO of the hospital..
the first time I had to go to ER and was greeted with the old...you are having a panic attack...I came away upset but then thought about the fact that it was partly my fault...I was the first person they had seen with mastocytosis...so I did just as I said...first papers to ER director and then also to the ambulance company..I wanted all bases covered..now I feel that when ER is needed...and since I carry papers as Deb mentioned...from my doctor..it is better...
good luck
redbird

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kesasur

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Re: Medical Alert Bracelet?
Reply #6 - 10/14/13 at 07:19:28

Ah, yes.... you are having a panic attack. that rings a bell.
Or: you are having an MSG reaction. That was a good one too.

I think that is a marvelous idea. I'll have to gather the info here (REMA protocols and such) and make a few calls. We have a hospital 3 miles away. It is a small local hospital but closer than our tertiary care hospital which is 20 minutes away.
Honestly, I can't blame the staff. I NEVER heard of mastocytosis in any of my own training (I was a physician assistant). I only came a cross it on my own 9 months ago- and then it was a matter of WHO to see.
AND I had no idea there were degrees of anaphylaxis. Makes me think I've been in it a few more times than I care to count. BUT since my breathing didn't shut down I've only gone to the ED 2x, because, well I DID begin to think (after being told so... over and over) I was having panic attacks. Yet- knew, deep down, I just wasn't.

Kelley

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peter

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Re: Medical Alert Bracelet?
Reply #7 - 10/14/13 at 18:02:42

Hay Red love you writing I have followed your blog for years iam in Australia
Now for the anaphylaxis with true anaphylaxis we don't make it to hospital for treatment iver people around you or the paramedic give CPR and unblock your throat
As you lay ded on the ground where you got stung
The hospital only see the aftermath
Now for mastocytosis of the bone marrow I didn't have bone marrow mastocytosis
When I had the Anaphylaxis that didn't happen until over a year later

Doctors diagnosis people with anaphylaxis and give epi.pens to anyone who has an allergic reaction or mastocytosis Moore then 70 percent are misdiagnosed
Thay have been using tryptase to confirm anaphylaxis for 10 years now

Well good to chat take it ezzzy

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Riverwn

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Re: Medical Alert Bracelet?
Reply #8 - 10/14/13 at 21:30:35

These are great ideas. I also called our local 911 and told them they would probably get more calls than usual from our home and I told them why and what I need them to do with EMS. Its worked well, they know me by first name

Talking about different types of anaphylaxis, I tell EMS staff, "I will not stop breathing, I skip it and go immediately into vascular shutdown." They are now getting used to thinking of shock in different terms and looking for different symptoms.
Ramona

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Starflower

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Re: Medical Alert Bracelet?
Reply #9 - 10/15/13 at 00:49:38

I went to the hospital yesterday after struggling with the stomach flu all weekend (blech!). At first I thought it might be just my mast cells... but my usual tricks weren't working, and after two days I was starting to feel worse instead of better Angry

They gave me an IV to re-hydrate and some good anti-nausea, anti-spasmodic medications.

Anyway... the reason I mention this is because the pharmacy technician was so pleased to have a list of my medications and triggers! All he had to do was go make a photocopy.

Heather

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Walkin' the line between faith and fear
This life don't last forever
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redbird Guru Offline I Love YaBB 2! Posts: 862	Re: Medical Alert Bracelet? Reply #10 - 10/15/13 at 03:10:08 once on a trip to take my dog to the vet for something...I mentioned my mastocytosis and he said vets study that in school..amazed me at the time... another thing that occured to me is....eduate the nurses as they do most or lots of the work in the ER and other places in hospital.. redbird.... with drooping feathers
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redbird Guru Offline I Love YaBB 2! Posts: 862	Re: Medical Alert Bracelet? Reply #11 - 10/15/13 at 03:12:59 another little hint... if you carry your papers in your purse..put them in a plastic baggie...saves wear and tear and they are all together.. redbird
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donnarenee0529

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Re: Medical Alert Bracelet?
Reply #12 - 10/28/13 at 05:30:58

I have a medic alert bracelet and necklace that says "severe allergies see wallet for list" since most of my triggers have been to medication. However, the card also states that I suffer from IA. I noticed that several people have stated that they have had issues with the ER docs not recognizing their MCD, and I have ran into the same issue. My last episode the ER doc told my husband that there was no such thing as IA and that I should never give myself an epi shot. Needless to say, my regular doctor told my husband to ignore that order since the disease is not as well known as others. It's frustrating to me because even though I carry around the letter from my allergist, the doctors still ignore the IA and tell me I'm having a panic attack (not sure why we are being misdiagnosed with this particular ailment!)

As to contacting local hospitals and 911....that is a good thought, but I'm concerned with being met with the same skepticism I've received in the past. I've even had an allergist tell me there was no such thing as IA and that he thinks I'm suffering from muscle spasms of the throat and the best thing that could happen to me would be for me to pass out from the lack of oxygen, then my throat would relax and I would begin to breathe normally and avoid the trauma of taking my epi shot. Really????!!!!!!! Has anyone else ran into the same issues???

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kesasur

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Re: Medical Alert Bracelet?
Reply #13 - 10/28/13 at 06:03:40

"I've even had an allergist tell me there was no such thing as IA and that he thinks I'm suffering from muscle spasms of the throat and the best thing that could happen to me would be for me to pass out from the lack of oxygen, then my throat would relax and I would begin to breathe normally "

this is exactly what my psychiatrist used to tell me. If I passed out I'd relax and be fine. Now, mind you, I've never needed an epi pen but I'll tell you I've wondered if I ought to have used one at various times. I probably get to stage "2"- but because no one has ever thought I was in anything other than a panic attack I "pushed" through, what ever that means.

Thanks for your input!

Kelley

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donnarenee0529

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Re: Medical Alert Bracelet?
Reply #14 - 10/29/13 at 01:07:43

Why is it when a new condition emerges or is identified, some doctors think the patient is either faking it, or is exhagerating it? I've only had two doctors believe me....my GP who witnessed the anaphylactic shock every time and the allergist that diagnosed me with the IA. You would think that the documentation from a licensed physician would be enough for any other doctor!! I just wish there was a specialist in the Houston area that I could go too. The only one here that I have been able to find only deals with SA. What is SA??? I haven't come across that term yet....

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