Hi Guys'n'Girlz
Well I saw my hematologist 2 weeks ago, and today received my first appointment for St Thomas's for 21 Feb. I have Primary APS, no lupus that I know of. Does anyone have experience of the doctor I am to see? I am going to do as detailed history as I can, along with my medication list they have asked for? Anything else I should think of?
Happy Tuesday all
Smiles 
Lesley
Hi lesley
yes, although she comes across as a little matter of fact she was fantastic. Listened with interest and cared. Started me on plaquenil and vit d (first doctor to notice i was vit d deficient). Tip if she gives you prescription go to the hospital pharmacy and get it.
I took symptoms diary, detailed list of events, illnesses throughout life, a list of questions, and a letter explaining what effect Hughes etc was having on my life.
Am si glad you got appointment at st thomas's. Hope it goes well.
Take care gentle hugs love sheena xxxxxx
Thanks guys - my only trouble is, I am not sure all I feel are symptoms or me being daft or it's nothing - small example, my legs often go all purple and mottled ..... what's that about, something of nothing or a symptom? - I am sure the fatigue and memory could be put down to APS or menopause? and as we all know the list goes on - my questions come into my head in the middle of the night... must take a pad to bed with me
Smiles to you
Lesley
Hi lesley
Purple mottled legs, memory problems, fatigue etc are all symptoms i get too. Amongst many others. Whilst some of us have other autoimmune cond such as lupus, sjorgens, fibro etc. These symptoms do seem to be common to Aps.
The purple mottled legs sound like livido reticularis, a rash which is used in clinical diagnosis of Hughes syndrome.
If not done already so have a look at Hughes foundation website at hughessyndrome.org for more info. Its a great site.
Take care gentle hugs love sheena xxxxx
I went to St Thoms back in 2004 desparately hoping for help. I thought I was looking at Lupus. A junior doc who I was disappointed to see at first saw I had mottled legs (livedo) I never knew I had that, so glad he did. I did get a chance with Prof Hughes and due to the legs, headaches daily from childhood and 2 miscarriages he diagnosed APS. I have never tested positive but he says each time the tests are not good enough to find the anitbodies in all of us. The fact that warfarin works most of the time is proof it is right for me.
Thank you Jade and everyone,
Jade, I have had 3 positive tests, with my b2glycoprotein very high on each test, 7 miscarriages, DVT in Sept 2010, PE's last year, and now severe lung damage due to the APS. I am on Warfarin, INR target 3 - 4 - My legs have gone mottled for years, and sometimes my stomach and midrift too, but wow, didn't know it had a name!! my stomach and midrift go really cold when it's purple? Also when I get the sweats, I get terrible pins and needles all down my back? Does that mean anything to anyone? I guess I need to write all this down.
this site is a breath of fresh air, again thanks to all
Smiles
Lesley
Lesley,
all of those are symptoms of APS and i had them all, i would recommend you write a list of all your symptoms how ever small and that way the doc can tel you i would also write a medical history again this is another factor taken into consideration when diagnosing.
do not feel a fraud we all have an issue at first but you learn that if you do not ask you will always think your mad.
Paddy
Hi lesley
yes again, is almost weird to explain cos pins n needles down back are painful and itch, especially at bottom of back!! Sound similar? Always thought to do with degenerative discs in back cos when back pain strikes I sweat (Ooops perspire or is it glow) Then the pins n needles start.
Hope you ok today.
Take care gentle hugs love sheena xxxxx
Sheena,
spot on with the painful itch ..... I also have a patch on my bad that itches like mad, but is totally numb - how weird is that, a numb spot itching!?
All these symptoms... I didn't realise they were symptoms, I just thought, they were things I had, that no others had... that maybe I am too sensitive and make too much of stuff - but have now realised I am NOT mad - so again thank you
Paddy, again thanks for the advice, I will do my medical history, in fact I have spent most of the night thinking of it.
Smiles all
Lesley
x
I have a section on my lower spin which is itch but numb it caused a lbrusie on my spine which i was told was the APS rash.
your welcome Lesley
Paddy
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