Another stroke.

[sharonap]

On friday got rushed to hospital by ambulance (blue lights flashig) Lost the use of my left arm/left leg left side face dropped. Doctors unsure whether had bleed or stroke. Spent most time trying to explain what antiphospholipid was did try to tell them I had Sneddon/s aswell but they could not find that on the computer so they just ignored that. Told to stop warfarin and have 300mg Asprin for 3/4 days was put on monitor for 3/4 days I kept asking why my INR levels wernt being checked told would be ok on Asprin no body listen to me. Had INR tested before I left hostpital on monday got results tuesday INR 1.9 no wounder I was feeling worst now on 10mg warfarin and Asprin to get levels upton 3.5 Why do doctors not listen Ive been dealing with this illness for 13 years but they treat me as if I dont know what im talking about. really need to get new consultant. Told no more HRT for me.

Sorry for moanning

just left foot and left shoulder not working the rest back to normal having physio to help get foot and shoulder working.

sharon xx

[taffydaffy]

So sorry that you have to go through all of this It's not our fault that we have rare diseases it's very worrying I have information in a polly pocket with my DX medication and Information just incase this happens to me plus I wear a medical wrist band and you are not moaning good luck god bless sweetie xxx

[MaryF Administrator in reply to taffydaffy]

A good idea the itemized notes and also the wrist band. I think it would help an awful lot. Especially as you can order them through The Hughes Foundation! M x

[sharonap in reply to taffydaffy]

I have got a medical wrist band the doctor removed it when he was trying to take blodd he read it but just ignored that it said sneddons/APS.

Will write something up and carry it with me

Thanks xx

[MaryF Administrator]

Well that sounds like an ordeal having all that going with the communication ignored. Are you under St Thomas' or just where you live, I hope we can all help, let me know how you doing! I shall be interested to know. Mary F x

[jessielou]

Hi Sharon

So sorry to hear you had another stroke hon, sorry too that docs will not listen, I know our delightful Aps isn`t common knowledge but you really would think the med team involved could find time to type Aps in a search box and learn, we have to!!!

Glad you`re on the mend, slow and steady hon..

Take care gentle hugs love sheena xxxxxxxx

[ClareSteggles]

Hi your not alone in this problem. I was rushed to hospital a couple of weeks back. The samething happened to me however the juniour doctor was also over looked aswell.

[tassie]

How scary for you and how frustrating that they wouldn't listen!

I'm so glad that you got through it and are recovering day by day.

No need to apologise for sharing your experience ...it isn't moaning.

[Hidden]

Gosh, you poor thing - I agree with the advice above and your comment about getting a new consultant. You need to have at least one great doctor who understand you and the illnesses. I have mentioned before that i always take my consultants details and give them to the team looking after me - i also call my consultant team (right down to the receptionist Diane!!) to make sure they know where i am!! I have had some appauling treatment (including being ignored in A&E with a broken back on warfarin!) so i don't take any chances now!

PLease don't think you are moaning - i used to feel the same but here is the one place you can truly vent and people will understand - not judge!

Take care

Tx

[Storky]

Its really worrying that they ignore the medical alert bracelets. I have one mainly because I also have a Bion implant and being on anticoagulants was the final straw when deciding if I should have one. However I now have to wonder as to its value. If an A & E Doc was to ignore mine and I was bleeding as a for instance and they attempted something as normal to most people as diathermy, they would quite simply kill me!!

Most of the time my other half would hopefully be with me but it is worrying if he was not and I was on my own and unable to communicate for whatever reason.

So sorry Sharon to hear your news and I really wish you well. Im thinking of you.

[tassie]

When I had my TIA they ignored mine and kept asking me questions ...I could barely think straight! And hubby wouldn't have a clue so any information he gave would be wrong.

I'm thinking about putting all my info and meds on a usb and either having it on a neck chain or on my keys...maybe both and hopefully they will see it or I can point at it or something and it will be easy for them to view everything....but I sure hope I don't need it!