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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Medical Alert Bracelet? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1381419714 Message started by kesasur on 10/10/13 at 04:41:54

Title: Medical Alert Bracelet?
Post by kesasur on 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

Title: Re: Medical Alert Bracelet?
Post by Riverwn on 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

Title: Re: Medical Alert Bracelet?
Post by kesasur on 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

Title: Re: Medical Alert Bracelet?
Post by DeborahW, Founder on 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.

Title: Re: Medical Alert Bracelet?
Post by peter on 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

Title: Re: Medical Alert Bracelet?
Post by redbird on 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

Title: Re: Medical Alert Bracelet?
Post by kesasur on 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

Title: Re: Medical Alert Bracelet?
Post by peter on 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

Title: Re: Medical Alert Bracelet?
Post by Riverwn on 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

Title: Re: Medical Alert Bracelet?
Post by Starflower on 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 >:( 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

Title: Re: Medical Alert Bracelet?
Post by redbird on 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

Title: Re: Medical Alert Bracelet?
Post by redbird on 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

Title: Re: Medical Alert Bracelet?
Post by donnarenee0529 on 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???

Title: Re: Medical Alert Bracelet?
Post by kesasur on 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

Title: Re: Medical Alert Bracelet?
Post by donnarenee0529 on 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....

Title: Re: Medical Alert Bracelet?
Post by redbird on 10/29/13 at 11:49:58

just want to mention a couple of things in regard to your worry about being taken serious in ER etc...

a phone call is soon forgotten...but a letter is something that must be held in the hand and read...make it short only one page..request a reply or phone call or some kind of way of letting you know THEY READ IT ...also ask if they need addtional infl

address letter to ER director and CEO of hospital...911/ambulance service...address letter to CEO or president of the company and and again request politely a reply...I have found both of these people take serious letters to them..that is their job ...if you have had problems in past visit...address that briefly..
and I would include a letter from your doctor on his or her letterhead..
that says what treatment in ER

redbird
"getting old is not for wimps"

ps ...if you want to be taken REALLY SERIOUS...sent the letter certified mail..return receipt requested..I have done this as well..important to remember THIS IS YOUR LIFE YOU ARE TALKING ABOUT

Title: Re: Medical Alert Bracelet?
Post by redbird on 10/29/13 at 12:00:37

well there are times that we just want to punch the doctor in the nose and scream...I am sick...
but one of the biggest problems with us masto folks is...we do not have the same symptons..all of us are different.. a ton of people have alike symptons ...so they all have the measles..so when they see us...you can eat pizza..I cannot...I cannot tolerate smells but you can...see what I mean..most of us have something different...maybe if the doctor takes the time he might find something alike..but it is hard...and since doctors limit time with each patient ...usually..and until the medical schools teach doctors that there is a disease called mastocytosis..it is going to be hard..
I am so lucky...my doctor is just a GP but she never rushs me ..we talk until we are able to figure out what to do next...and she listens..
be tough it is your life you are talking about
redbird

Title: Re: Medical Alert Bracelet?
Post by donnarenee0529 on 10/30/13 at 04:34:18

redbird,

Thanks for the tips. I am also blessed that my GP listens to me. He's always been very patient with me and has always told me that I know my own body better than he could, so he is very open to listen to me. I have actually sent him an email and requested that we meet so that I can make a medical binder with his assistance for me to carry around. The next step will be contacting my local hospitals. I've been very lucky that so far I am only needing an H1 inhibitor, but I can see that it is starting to be less effective. I can feel my body struggling to breathe, but not quite yet anaphylactic shock. So I would love any advice that anyone can give on what I should suggest as the next phase of treatment, since this is not only new to me, but also to my doctor.

Title: Re: Medical Alert Bracelet?
Post by Riverwn on 10/31/13 at 10:12:35

OMG Donna, Im so sorry that uninformed medical caregivers would not take one minute to educate themselves before giving you advice that could kill you!! Losing conciousness and starting to breath afterwards is ONLY with an anxiety attack--NOT WITH SHOCK, you will die! PLEASE ignore this ignorant advice!

The EXPERT Drs on Mast Cell diseases (Drs Castells, Escribano, Akin, Afrin and a few more) give a few scenarios where you should take your epi. They are; trouble breathing,(or) a feeling you are going to lose conciousness, (or)high BP during mast cell reaction (where people have POTS), (or) a feeling of impending doom during a severe mast cell reaction,(or) sudden swelling around the throat/mouth areas and ANY SIGN that you are going into shock. Medical staff are not really educated enough as to the new definition of shock and the fact that there are different kinds of shock, not just one cookie cutter type.

Donna and Kelly, Please---start keeping an ER book, just for you with some info from TMS by Drs for other Drs to read. Also, I want you to ask your Dr for a letter printed out from him and his office, that says what he wants them to do, how to treat you when you are having a mast cell reaction and shock.

Ive never heard of SA term, I dont know what that is.

You might look to the MD Anderson hospital right there in Houstan with you. They do A LOT of research on Masto and their Drs know mast cell problems very well.i would contact Srdan Verstovsek, MD, PhD there. He is also on TMS board of expert Drs.
Good luck to you both!!
Hugs,
Ramona

Title: Re: Medical Alert Bracelet?
Post by Riverwn on 10/31/13 at 10:14:07

Sorry, didn't see page 2 lol.. Great advice from redbird!!

Title: Re: Medical Alert Bracelet?
Post by donnarenee0529 on 11/04/13 at 10:06:21

Thanks, Ramona!

When I received that advice, I obviously ignored it and informed my GP. He told me that I was to disregard ANYTHING that doctor said. I actually just went to my GP today since I am having flare ups lately (chest getting red, chest pains from it tightening, and the feeling of my throat swelling - but not to the point that I can't breathe) and he has signed off on my medical book (thanks for that advice also!) and added two new meds for me to start on until I can get in to see a specialist. Singulair and hydroxi-something.....haven't picked it up from the pharmacy yet, so I can't remember the name. I plan on talking with my pharmicist as well, since there are so many names for some drugs and I don't want to take the wrong stuff. Just add them to my list of can't haves!!! (I believe I am up to 30 something drugs that have triggered some sort of reaction).

I just want to let everyone know how much I appreciate this forum. Being diagnosed with something that no one I know has every heard of, I really felt alone....dismally alone. But then I found this group, and the wealth of knowledge I have gained, not from doctors, but from the people here - has probably saved my life. I have been living in denial since my diagnosis, and when I started feeling bad a few weeks ago, I decided to log on here and read. I read so many posts and found that there were things that I was doing to myself to bring the attacks on. Kowing now that I can be taken seriously by the medical community (albeit not the entire medical community), but someone who doesn't think I'm crazy or faking it. I'm trying to come to terms with this disease (and yes, to me it's not a disorder, but a disease of my body) and knowing that I have a place to turn and ask questions, or cry about my problems, and find answers - that to me is a miracle. It is a miracle I found this group and a miracle that I have found some kinship in the people here.

Thank you to each one of you that contributes to this forum. You may not realize it, but someone needs to read your story!

Donna