Do I really need a medical tag?

Hello,

I was diagnosed with APS after having miscarriages. I have yearly appointments at ST Thomas' and the last tests revealed my antibodies are still high. I've had lots of symptoms like headaches, dizziness, brain fog etc that could be associated with APS but at my consultant has never suggested I'm on medication or that I may have serious problems. They have said that I can take 75mg aspirin if I want to have another baby so I take it anyway in the hope it might hel alleviate the other symptoms. So do I really need a medical id tag? How might the fact I've got APS and am on a small dose of aspirin affect me in an emergency?

Thanks

Thanks

22 Replies

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  • Hello

    Where are you from?

    I think you need to change your consultant. Please have a look at the list of consultants on hughes-syndrome.org

    Best wishes.

    Dave

  • Hmm, My consultant is on the list . Maybe now I'm past the baby bit, they will look at my symptoms more in relation to Hughes rather than lack of sleep and having very young children !

  • Yes, I used to have similar symptoms to you and I was put on Warfarin and now Fragmin.

    Good luck and let us know how you get on.

    Dave

  • Hi Dancing

    I just had a medical ID bracelet tag made for myself. I have Factor V Leiden and also Anti-phospholipid Antibody. (was diagnosed 8 months ago). I'm on Warfarin daily--I believe if you have any of these blood conditions it is important to carry some form of ID with you--I carry ID in my wallet, but decided that if you are alone and something happens and it's on your wrist, you can be treated properly. I think it is a good idea for you to have one made up.

    Mozelle

  • Yes, I think I should get one but not sure what to out on it, ie if it just says APS they may assume I'm on warfarin but I'm not, so maybe I out APS, 75 mg aspirin? Or is aspirin irrelevant?

  • Hi Dancing

    I have listed on mine 3 medical conditions on the front of ID tag, and on the back, Meds: Warfarin, and my other meds, and Allergic to: and listed my drug allergies. Believe it or not, it all fits on the ID tag. I bought one with a red emblem on front, and small red emblem charm hanging from it. It's an ID bracelet. Also, it's a good idea to carry a card with all the info on it.

  • Hi, I am on warfarin and selftest. I started with 75 mg Baby-Aspirin. That was ok for a couple of years but then my symtoms returned and new came on. I had to switch over to warfarin and most of the acute neurological symptoms disappeared.

    Are you sure your doctor understands APS? That is very important. You must tell him your symptoms.

    Do not give up! So many on this site have had healthy babies with APS after several miscarriages.

    Kerstin in Stockholm

  • Thanks Kersten, I have been very fortunate and with treatment had two healthy babies. The clinic was really good during that stage but now I think I need to discuss with them my symptoms related to APS rather than brushing them off as being related to lack of sleep and having two young children and a husband with disabilities to look after!!!

  • Hi there

    I'd say definitely get a medic alert tag done! The possibility of having APS will affect treatments they can administer and any kind of treatment plan put in place for you in hospital. Include aspirin on it for the moment. If you don't want to get a new one done every time your meds change there are loads of options these days with changeable paper slips for writing your information on .

    Mine is inscribed with my name, my emergency contact, my conditions and 'further information on card in wallet' as my medications are always changing in type and dosage.

    If you're in the UK too, then this is the site I get both mine and my Dad's from:

    universalmedicalid.co.uk/?g...

    Hope that helps!

  • Thank you so much everyone

  • I have a short list of contacts -- and #1 on the list is my insurance company's 24 hour nurse help line--so someone who has records of my disease can explain my condition to treating docs. My fear has always been that if I have yet another mini stroke caused by a clot that the ER do will see I'm on warfarin and shoot me up with Vitamin K. On the other hand, if I've been in a car accident then I would probably need V K. so, I want them to know not just what Im taking but also why I'm taking it. I also, on trips, take an emergency thumb drive with med data on it. Up you can buy such drives on line and they come with appropriately marked cases you can wear on a key chain.

  • Hi: I have APS and bought a medical ID bracelet at the insistence of my family, however, I don't wear it on my wrist. I attach it to the outside of my pocketbook and it just states that I'm on Warfarin. APS is not well known in the USA but Warfarin is. I also have a medical ID card with meds and conditions in my pocketbook. By the way, the bracelet just has a medic alert sign on the outside and the word Warfarin on the inside. Your doctor can recommend what to put on the inside of the bracelet if you decide to get one

    Wishing you the best.

  • Hi,

    although i was diagnosed 27 years ago with APS i have only in the last year got a bracelet.

    I am so glad i did. sure, it could all be in the mind but i feel "safer".

    After getting one ( off amazon for £14.99) i read that paramedics check for bands/necklaces etc, not that i plan on needing any paramedics!!!

  • It's funny, I got mine as soon as I was diagnosed as I've previously worked in emergency services (Police not Paramedics) and knew first hand how important they were.

    I was quite surprised that no one in the medical profession recommended it to me but when my GP clocked me wearing it he was impressed with my initiative!

    You'd think because it really is that important they would advise you to get one when you're diagnosed!

  • I have to say the medical professionals I've seen have seemed quite flippant about how APS could affect me other than miscarriage! I think if I was on warfarin I wouldn't hesitate in getting one but so far I've not been prescribed anything when not pregnant . Going to get a band anyway and discuss further with my consultant my other symptoms x

  • You are diagnosed (good!) and your doctor is on the list of APS-specialists.

    Yes you are right! Now you must have a serious talk with your APS-Doctor about your symptoms.

    I wish you the very best with that!

    Kerstin

  • I have an Allertag which you wear around your neck. It has a waterproof seal and inside you have a rolled up piece of paper that you can put details of your meds, your medical people, next of kin etc.

    I decided on one of these as my medications seem to keep changing and it is quite easy just to fill out a new piece of paper and put it in. Where an engraved one would have to be re engraved or discarded. I also carry an A4 sheet with all these details in my wallet. So should I get taken into hospital, as I have had to do on several occasions.

  • In Sweden all people on warfarin may wear a necklace with the word WARFARIN on a badge.

    I have also got a card with my Identity and a photo and that I have APS and the name of the hospital and my doctors name and to call a physician on duty in case of emergency or surgery. Stating also "increased risk of thrombosis".

    Kerstin in Stockholm

  • I was only diagnosed in March this year and ordered a medic alert bracelet immediately from Universal medical i.d it took about 3 weeks to arrive. I went for a stainless steel bracelet but after only 6 months it is almost illegible, seems to be covered in scratches and you can't fit very much on it either. All I could fit on mine is my name, Warfarin, aps- Hughes. The engraving isn't very deep so I've been thinking of attaching a tag to it similar to my Dog's tags which are deep engraved and filled in black and still easy to read after about 5 years or so. I need an i.d bracelet with colour filled engraving if anyone knows where I can find one.

  • Is yours a proper MedicAlert bracelet I wonder? I've worn one for decades, It has a phone number and a personal reference number on it as well as brief details. The MedicAlert foundation has a file on me including some important letters about dealing with a problem that I have being 'intubated' (getting breathing tubes down my threat). The paint may have worn off but the engraved reference numbers remain readily visable. In an emergency situation I expect , and have authorised, my full details to be provided to any medic needing same.

  • On the question of whether or not to have a medical id tag, I take the view that mine will alert medical authorities to the ready availability of a lot of very relevant information that I may not be in a position to supply. I look at is as a very cheap form of insurance that could save my life.

  • I agree with you Tim which was why I bought one, problem is I can barely read it and I know what it says. Yes it is a "proper" one but me thinks a rubbish one. It's from medic alert I.D.

    universalmedicalid.com/prod...

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