NeuroTalk Support Groups - Medical Alert tags

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Medical Alert tags (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/21450-medical-alert-tags.html)

Medical Alert tags

Hi to all! I hope your day is a good one!
I was wondering what info should be added to a medical alert bracelet? Should I just say RSD/CRPS? Should I somehow state something about injections?
Thanks!
Hippy

Good question!!
I've been thinking the same thing.
I'm not quite sure what to put on one as so many in the medical profession have never heard of RSD/CRPS.

Anyone have any ideas???

Thanks,
abbie

Hi Hippie and Abby. My surgeon who diag. me said the Dr.'s will know what RSD/CRPS is. A lot of them never heard of TOS.. including my pain doctor. I would suggest however, if ya don't want to put this on your medical bracelet.. that we can ask our "Good understand doctor's what to put down". Mine would say.. surgery only if NEEDED.. I have RSD!!! Love, Desi:hug:

Hey Desi,
Thanks for the GREAT IDEA... I'll ask my doc what he thinks should be on a med alert tag!

Funny about some docs knowing and some not... My doc had heard of it but had never treated anyone before me. He now uses me to teach other docs in the area about RSD

Maybe it's a geographical thing about docs knowing one disease/syndrome over another... could that be possible??? (things that make ya go hmmm?)

Gotta love it when my doc brings in a group of docs and says look at this girl, she's the one I've been telling you about... (For some reason I always get the feeling like Jeff Foxworthy says...HEY YA'LL WATCH THIS.) I have yet to meet one of these doctors that has seen someone with RSD...some have heard the name but that's all---they don't know anything about it. I tell them as much as I can about it and show them what it looks like on me with hopes that if they see it again..they will have a heads up.

Anyway... sorry to go off in a wierd direction here... but THANKS AGAIN for the suggest to ask doc!!!

:hug: Abbie

Thanks for the input, I have to take the form to the Doc to fill out a section anyway, and he can help me decide.
Thanks again!
Hippy

From an RSD site..

SURGERY AND RSDS

SURGERY AFTER A PATIENT HAS RSDS CAN CAUSE AN EXACERBATION OF THE DISEASE. NOT IN ALL CASES THOUGH.

IF SURGERY MUST BE PERFORMED, PROPER PRECAUTIONS MUST BE TAKEN, SUCH AS MAKING SURE YOUR PAIN DOCTOR IS HEAVILY INVOLVED IN THE PROCESS AND THAT SYMPATHETIC BLOCKS BE USED BEFORE AND DURING THE PROCEDURE.

JUST ONE MORE REASON WHY DRS SHY AWAY FROM RSDS PATIENTS, IT'S UNDERSTANDABLE BUT TRAGIC.
_______________________________________________

Maybe, on the tag, it should just say, RSD, sympathetic block maybe be reg'd, consult Dr. (I don't know how many words can fit on one little tag! hee hee

Hi Everyone.

Unless things have drastically changed from when I got my Medic Alert bracelet (I got one that is titanium plated, because I am allergic to other metals), they can only fit so much info on the back of the emblem. The person that you talk to on the phone when ordering your Medic Alert thingy will help you figure out what is the MOST pertinent info that should actually be engraved on the emblem. Other info can be put on their file for you, and that the Paramedics or EMTs will hear about/get when they call. They are supposed to call AS SOON as they see your emblem.

This is what I have on the back of my emblem:

Reflex Sympathetic Dystrophy.
Takes Anticonvulsants
Allergic Wasps
(and then my reference number is engraved below all of that)

When/if you call to order a bracelet or necklace emblem (they have both available), they will tell you that they won't put initials like "RSD" or "CRPS" or "MS" or whatever else on the back of the emblems. They say that is because in an ER situation it is just best to have the actual WORDS there for the ER folks to see, and not leave ANYTHING to any "Guess work" or "assumptions" as to what a disease is.

In my FILE that they have, it has the other stuff, about my metal allergy, other meds that I take, used to have that I had my SCS implant (when I did...that has been taken off when I did an update), other allergies (like to Morphine..I cant have that stuff, it makes me horribly sick), other conditions and problems that I have, and who my doctors are. When an ER worker sees your Medic Alert emblem that are supposed to call right then (the 800 # is also engraved on the back of the thing) and get all of the info that you have on file.

Pretty much, you have to think about what is the MOST important info that you might need communicated to the ER folks if you were not able to talk for yourself. In my case, it is pretty important that they know about my Wasp Allergy, because that could very possibly be the cause of my not being able to communicate. They need to know about my RSD (rather they KNOW what it is right then or not....they will have to start figuring it out. BTW, I have had LOTS of medical folks ask me about my bracelet and what "Reflex Sympathetic Dystrophy" is....so it is a way to help educate folks too), and they need to know about the anticonvulsants, because that is pretty important (incase of them NOT giving it to me, or giving me something that interferes with it. When I put that on there, I was taking Neurontin. Now I take Topomax). Like I said, once they call the 800 #, they will get the entire list of meds that I take.

I think that it is only smart to have a Medic Alert bracelet or necklace to help us take care of ourselves as best we can. I hope that I didn't make matters more confusing by butting in here, but that maybe it helped a little to hear from someone that already has one of these things.

I hope that you all have a good weekend.

((hugs))
Jose

I just happen to have Michael and my applications for Medic-Alert right here in front of me ;) I, too, believe it's important to wear one... especially for people like us, who have aids. I'm not so worried about myself, but I'd hate for anyone who tried to help me to get sick from doing so. That's my worst nightmare. Just let me die, please! Don't touch me!

If there is a financial problem, the kind folks at Medic-Alert have what they call "sponsored memberships". Just about anyone on SSI or SSD qualifies to get their tags for free. Way to go Medic-Alert! You people rock! :D

But I do have a question for everyone... I will be sending out these apps in the next day or two, so I need advice quick, please. Should I go with RSD, or should I use the soon-to-be more recognizable term CRPS? I know they have to write it all out, no initials, so wondering if crpsII would even fit?!?

Hi Rogue,

Specifically for you,what about "Causalgia"? No confusion, and it's short.
all the best :)

I am about to get one, and I am putting:

"Vanessa **** *****
Reflex Sympathetic Dystrophy
Medication list in wallet"

What do you think? There are too many meds for me to list them on the bracelet.

Also, where is a cheap way to buy one (a $20 one'd be fine and I keep finding $40+ ones!)?

TIA! :hug: