Confused.com

[tat_lass]

Hi all, Im a 36 yr old female from Yorkshire UK.. I'm new here and am currently watching all ur posts with interest. My neuro has referred me to a haematologist for advice after suffering from years with crippling head aches, neck pain, total left hand side pins and needles/numbness and at times total loss of feeling in my left hand and foot. I've had 8 miscarriages before 10 weeks and 3 after 12 weeks, of which 2 I had to have blood transfusions. Although I have gone on to have  3 full term babies they were tiny (6lb) and had breathing difficulties when born. However they have all grown to be beautiful healthy children.. I have osteo- arthritis and inflamed GI tract/bowels, I have ulcers in my mouth, on the back of my tongue and get blisters up my nose, round my mouth and below 🙈. At times my speech seems slurred and just looking at the outside light feels really bright and makes me feel dazed and squint.. few mains,,, amongst other symptoms :-(( Iv had tests in the past 18 month and have all had  iron and vitamin D deficiency, my ESR is raised and lupus anti coagulant has been positive, however anticardiolipin antibodies were negative.  So My neuro referred me to haemo with " anti - phospholipid antibody syndrome   and asked haemo to give me advice...

So the thing I'm puzzled with if anyone could shed any help please is today the haematology has told me that I have lupus positive bloods but I do not have lupus because I have never had a clot or I don't show a rash. My MRI scan (from 6yr ago) didn't show any sign of stroke etc.. He also said that my miscarriages could not be linked to lupus because there was not tests done on the placenta at time of miscarriage.. Even further to confuse me he said I have sticky blood, and would have to take an aspirin each day to thin my blood and he would monitor me 6 monthly to see if there is any improvement in headaches and numbness etc, and could consider putting me on wharfrin in future if symptoms don't improve with aspirin.. I'm so confused now, what is the difference between lupus and sticky blood and why would it be sticky blood if lupus has been positive.. Sorry bout the essay lol

[MaryF Administrator]

Hello and welcome, you have landed in the right place to joint the dots.  Firstly your GP or Neuro needs to do these tests:  hughes-syndrome.org/about-h...   In the hospital, as they are time sensitive, (the samples taken).    Aspirin on a fully stomach daily is a good starting point, I am on that plus a few other things.  Please have a look around this site below and see all the symptoms and related diseases.  (a lot of us are gluten free due to irritated stomachs, this is not uncommon, and some have full Coeliac disease, I don't but stay off the gluten anyway as it irritates my system).  hughes-syndrome.org/about-h...

hughes-syndrome.org/about-h...

It is crucial that either your GP or Neuro refers you to one of the recommended UK specialists:   hughes-syndrome.org/self-he...

If necessary please do show them all the links and also this recent debate from the House of Lords, which shows that more needs to be done in terms of swift referrals for patients:  publications.parliament.uk/...

Also for your Neuro and GP a short film:  youtube.com/watch?v=V3J8BLk...(Not working as expected?)

MaryF

[fanbrits in reply to MaryF]

OMG thats for the video. that was very helpful to me as well 

[MaryF Administrator in reply to fanbrits]

Good, keep well.   MaryF

[Manofmendip]

Hello and welcome.

I agree with everything that my colleague Mary has told you.

It would be very interesting if you could have a month's trial of Fragmin (Low Molecular Weight Heparin) injections.  If your symptoms were much improved on that then it would indicate that you could well benefit from long term anticoagulation, as many people on here, me included, are on.

Keep us informed on your progress.

Best wishes.

Dave

[tat_lass in reply to Manofmendip]

A few new routes to look down,, it's great when you feel you have hit a brick wall and then come across a re-assuring, educating support group like this.. Thankyou you both for the warm welcome and information.

[Debbweb01 in reply to Manofmendip]

Can u please tell me what Fragamin Shots are? I'm not yet coagulated after 6 months and no doc here in my area accept NYC, & I can't afford NYC, are able to really know as much as I do about APS! They've all failed my APS test badly lol... 

[Manofmendip in reply to Debbweb01]

Fragmin is the brand name for Dalteparin, a low molecular weight Heparin.  It is an injectable anticoagulant.

Dave

[Manofmendip]

Thank you for your kind comments.

Dave

[tat_lass]

Thankyou, another great help, seems more clearer with each comment.. Great work and thanks for all ur advice 

[Yllek]

Hello and welcome,

You've been given wonderful advice that I can't add any more knowledge to as I'm quite newly diagnosed myself. However, I wanted to say I am not positive for anticardiolipin either but was only positive for lupus anticoagulant like yourself - but I don't have lupus either just Hughes Syndrome.

I'm sorry you've struggled for years but hopefully you can now find the correct Doctor and treatment to help you.

Welcome to the forum xxx

[Lure2]

I just want to say wellcome to this friendly site and hope you will stay with us here.

You have got such excellent info so I have nothing more to add. I have also Lupus Anticoagulant.

 I usually tell people to buy a book from Kay Thackray called "Sticky Blood Explained". She has APS herself and in that book she writes about the different symptoms and how it is to live with this illness. It is written some years ago so the newest oral drugs are not there but the symptoms we still have in common.

Best wishes from Kerstin in Stockholm

 

[tat_lass]

Thank you all for the warm welcome..  It's so re-assuring to know other people like yourselves are/have been  in the same situation, it was really confusing knowing I was lupus positive, put didn't have lupus. But now been told I have sticky blood but cant have a diagnosis because they don't actually know why or what is/has caused it.. I have come across lots of useful info in the last 2 days since coming across this site.. I will look into all the info, video's and books from you all.. Thank you for taking the time to reply.. Zoe xx

[Debbweb01]

Yes please read Sticky Blood as Kerstin says! I tested positive in October and read the book and without this forum I don't think I cud have gotten my sister to go get herself tested, as it can be familiar! She also tested positive and has had no blood clots but we both had issues with out first pregnancies and so did out poor Momma! Keep on here and welcome and take ur aspirin on full tummy! Godspeed!

[tat_lass]

Hi, 8 mth down the line and I'm still no further. Iv been getting regular bouts of all of the above symptoms and lasting longer periods. At the moment my belly is swelled to larger than it was when I was 8mth pregnant and my stool samples are showing inflamed bowels but with no reason or explanation. My hand is completely raw with not much skin left on it and deep splits/leasons. Also there is a very big surge in my headaches to point I'm wearing sunglasses in winter. I visited my doctor the other day (again) and he told me that my rheumatologist has advised to be referred to a bechets specialist and my heamotologist has advised to keep seeing rheumy. In the meantime all the doc seems to do is up the mg of meds I'm taking including anitriptyline,, sertraline and pregabalin. I'm lost confused on 12 different meds/drops and steroids and worn down with this battle I have been fighting since I was 13 yr old.. I'm still taking vit D and iron replacement as there still showing low. Frustrated & worn down