Hello :)

[Anyac81]

Hi I recently found the site and joins Lupus uk forum, after describing some issues I'm having another member kindly mentioned Antiphospholipid, my diagnosis at the moment is SCLE, fibro and arthritis, for over 7 weeks I've been suffering with severe shortness of breath and dizziness and generally feeling unwell , I keep getting positive d-dimer so they looked for PE but X-ray was clear, they did note my bloods had to be processed quickly due to congealing too fast in the tubes? They used a medical term lol, it's a stab in the dark but I'm wondering if there is a sticky blood issue going on as the type of lupus I have should only affect my skin, not my lungs, but feeling pretty rough for quite some time now and I don't have my next appointment with a rheumatologist until may. Any thoughts and experiences with this would be greatly appreciated x

[Anyac81]

Thank you for all the helpful info

They gave me one injection of fragmin, that was it and the consultant said they can't find anything on the chest X-ray or vq scan I had (breathing in a gas?) so he said he was stumped and referred me back to my Gp! It was very bad yesterday and I did consider a&e but didn't have anyone to watch my children it's eased off a little today, I'm not a assertive person and I think that's why I get fobbed off with doctors sometimes, I think it's time I put my foot down and demand to be investigated further, I can't carry on not being able to breath. My vit D and ferritin has been very low for years, I do supplement but it's almost like my body can't keep hold of it, I don't think I've had vit b12 looked at, I'm not sure

x

[ndstephens49]

Hi Anyac81!

I have had episodes when my INR was too low and that my blood clotted in the tube before it could be processed by lab. I had to receive an injection of low molecular heparin immediately.

I didn't know this had happened to anyone else.

You'll learn lots on this forum. Good luck!

Nancy

[Yllek]

Hi

You've had loads of great info from Hidden . I'd just like to say Hello and Welcome to the forum.

A lot of us have had similar stories to you, myself included. I'm now diagnosed and on warfarin (amongst other things!) please ask your doctor to test specifically for the antibodies.

Good luck and keep us informed how you get on.

Kelly

[Lure2]

Well said!

Some of us like me have microclots or microembolies that are not always seen on a Scan but do damage all the same.

Best wishes from Kerstin in Stockholm

[Anyac81]

Thank you, it's very interesting indeed! I have something to go back to my doctor with, it may not be related but it's definitely somewhere to start x

[Lure2]

Hi Anyac 81.

Find an APS/Hughes Syndrome-Specialist!

I had a lot of PEs as I have now Pulmonell Hypertension which is a symptoms of HS.

See to it that you do not go around with exstremely high bloodpressure in attacks as I did before I started Anticoagulations with Warfarin and sufficiant bloodpressuredrugs. I did not feel every time when I got my PEs probably as it is said that I have microclots and emboli. They have never been seen on a Scan. But do damage!

Best wishes from Kerstin in Stockholm

[Anyac81 in reply to Lure2]

Hi this is what I'm concerned about, I had the finger prick test in my Gp office, kind of looks like a pregnancy test cassette, and it's still positive d-dimer I'm quite concerned there is damage going on that is being ignored, I've decided to see my Gp again Monday morning and ask to have the blood tests that were mentioned on here that look for the antibodys, need to get to the bottom of it asap x

[Lure2 in reply to Anyac81]

Hi,

Again I suggest you listen very carefully to the full and very good advice APsnotFab has given. You must not go with this symptoms!

Kerstin

[Manofmendip]

Hi and welcome

I totally agree with the very full advice that my colleague APsnotFab has given you.

Dave

[Wittycjt]

Welcome aboard. Hopefully you'll get a good response from your doc on Monday, best of wishes. Cindy in NJ. Where are you located?

[MaryF Administrator]

I agree totally with what is being said here, your health comes first and by all means if the hospital is not listening, you can show them our answers on here. It is very important that you receive detailed care with a plan not just for now but for the future to prevent this happening again. MaryF

[jetjetjet]

I am jet live in N.H. where are you from I now it's easier to help when we know where you are and to get you Dr's that are in fact APS doctors! and by the way WELCOME

[Anyac81 in reply to jetjetjet]

Hi thank you

I'm in GB , West Sussex