Giving advice.....

[Suzypawz]

I got asked today to talk to someone in Scotland as a friend recognised symptoms I've mentioned previously to them.

She gave me her contact detals & I spent about 1/2 hour or more talking to her.....

She told me she had 3 strokes & 3 heart attacks, she is now disabled & she usually uses sticks or a wheelchair to get around.

I asked her many questions about her symptoms.......& all of them were APS symptoms!

She also disclosed to me she did have a miscarriage too earlier on in her life!

Also she was once told years ago the words 'sticky blood'!! but never tested!!??? this was after an operation she had.

She is now 52 & I have advised her on having the 2 blood tests needed to find out if she may have APS.

I have also left her with my web site details as on there is info' about APS too.

She has been diagnosed with Fibromylagia & Lupus already, so I did tell her it may be those giving her a lot of her symptoms.

But she says most days she feels so depressed & feels like there is something else that may be giving her a lot of them too...but feels so alone as no-one is listening.

She also says she has a very bad pain behind her knee....this is worrying me ..... she says she cant see a doc' she can talk to till the beginning of Dec'!! could this be a possible clot? I didn't let on that I was worried about it though.

I explained if the tests results say she has APS then at least she can start going on the necessary medicine to help her ....but if the result is she hasn't .....at least then she can cross something off the 'possible' list & we can start to find out what it could be .

The poor woman was almost in tears just by talking to me...you could feel the relief just talking to someone that understood what she was going through

I'll let you know how she gets on....I just hope she'll be ok...one way or another

[MaryF Administrator]

Great support, and it will make a difference. Somebody was on here a while ago with a contact in Scotland re medical professional. I hope this situation improves. Hopefully this site will help. Mary F

[Suzypawz in reply to MaryF]

Thanks

If you know any more details on the Scotland contact if you could let me know via here or pm me I would appreciate it please, just to see if it is the same lady as I'm hoping I'm doing the right thing for her. xx

[jessielou in reply to Suzypawz]

Hi Suzy

Andrew mentions a Doctor Anniele Hung (interest in rare blood disorders) and a Dr Horne at the Royal I Edinburgh. Although I think Dr Horne was moving to Leeds.

Hope the lady you spoke to ok and that you are too.

Take care gentle hugs Sheena xxxxx

Also member with the screen name Edinburgh may be able help??

[Suzypawz in reply to jessielou]

ta hun, I will look into it & let her know these names when I next speak with her xx

[paddyandlin]

Well done Suzy you star!! I think it istimes like those that show how much or a caring person you can be, regarding information you may want to talk to Kate at the HSF as there is a scotland leader for HSF not sure who is you may want to talk to her.

paddy

[jetjetjet]

hi pawz , i was just thinking the same though as paddy, i would think that would be one hell of a start, maybe some close by, a person to talk to and be shown the ways that can get her on the right path bfn jet alrite paddy good man. !!

[Suzypawz]

I was hoping there would be...if it is confirmed APS is what she has, or maybe she could still get the support needed of that leader too?

I wasn't going to mention it to her yet until she has had the tests, but it might help.

Thanks for your support with this xx

I just hope she gets the help & tests needed before anything else happens....

[Storky]

Hi Everyone, similar vein as suzy, went to dinner with a lot of dear friends on Friday and found that one of them who I knew had had similar symptoms to me but worse problems with eyes had recently been dx with Sjogrens. Then she casually says "I was told I had "sticky blood" years ago.

I asked her what they did about it and she said she has to take aspirin. I asked if she was seeing anyone about it now and she said 'no it went away".

As far as I am aware APS does not ever go away, the antibodies can go up and down but your potential to clot is always there. Is that correct?

The fact that she has Sjogrens, migraines and a lot of the usual other typical APS type symptoms worries me. She also has very bad vasculitis with her legs and has had a number of ops on the veins that have not been successful but she has not ever mentioned to the docs about the APS because she thinks its "gone".

My real fear is that as an ex BA person like me, she fly's a lot still and I want to make sure she is protected. I don't want to scare her but Prof says that we should use Heparin Injections when flying. She is just about to go off to Mauritius which is a long flight and I am torn between pushing her to get this sorted from the injections point of view and labelling her with this so that her Insurance may not cover her!! Its a dilemma as I don't want to say anything if its not necessary.

What do you think?

[london-lass]

Hi there

The usual treatment for APS when there has not been a clotting incident is aspirin, so I would think that that should be OK. If I was her I would do the classic things like support stockings, deep breathing, foot exercises and walking around. I suspect she would need to see a consultant before she got heparin, so a bit of a palaver.

Well done being helpful, though I would be tempted to leave well alone! At the end of the day we are not medical

Take care