Question for the sero-negatives...

[CindyCB]

Did any part of your testing show clotting problems with negative antibodies, or are the whole lot 'normal'? Thanks all.

[emmaj]

all have been normal apart from a raised igm which is one of the immunoglobins

[Storky]

All mine were in the normal range. Only abnormal antibody was thyroid which was high. I have however had 4 thrombotic events and three miscarriages plus of course loads of the other symptoms which of course makes it important for the CLINICAL history to be taken seriously!!!!

[MaryF Administrator]

I have repeatedly failed tests, however in process currently. I have had multiple clots in legs, (as have my two sister, add lungs to this also). I had off the scale migraines as a teenager, also pericarditis repeatedly, also severe dizziness, with no headache, but unable to stand due to how extreme it was, diagnosed as inner ear infection.... which each time turned out not to be the case. However I have three other disorders which over lap and annoy each other etc etc MaryF

[CindyCB]

Thank you for the replies.

I've never had a thrombotic event - well, never a diagnosed one. I did have a 'stroke-like' migraine 3 years ago which has left me with numbness and pain on my right side but my MRI is clean.

I suffered migraines from the age of 9, slightly better as I got older and they've returned with a vengance in my 30s. I have a constant daily headache and migraines most weeks. In fact I'm in the middle of a week-long one right now.

I suffer with fatigue, cog-fog and memory problems (especially short-term), vision blurring etc. My gums bleed quite heavily and I have had a few root canals despite taking good care of my teeth.

I saw the team the Lupus centre earlier in the year and Dr K thought I might have APS - bloods were all normal (I do have very high thyroid antibodies though and hypothyroidism). I have livedo quite markedly over my knees and upper arms.

I trialled Clexane - got rid of my headaches and migraines beautifully but the fatigue was awful. Around that time I was given a diagnosis of something else (which I am still not sure about) but I am wondering if I should revisit thinking about APS?

My thyroid meds are in good shape - I monitor them myself - so I know it's not that.

Thanks again.

[SharontheSheep]

Hi, I have positive thromb something or other and low inr and have been told that I have had 2 borderline positives but at St Thomas they still class me as seroneg so I am completely confused. My diagnosis was completely clinical, migraines, balance probs, Reynards, Lupus symptoms and 10 failed pregnancies. Now I have other symptoms too and some lesions on my brain! I'm on Clexane at the moment and I feel pretty good. Still having a few memory issues but compared to last week it's positively brilliant.

Keep at it, you'll find out what it is

Love

Sharon x

[CindyCB]

Thank you Sharon.

The Clexane helped so much with the headpain and actually my gums stopped bleeding (I would have though it would have the opposite effect if anything). My muscles felt so nice and relaxed but it also gave me worse fatigue which was strange.

Most people react well to heparin shots don't they? Would there be any rationale for trying Warfarin if the Clexane didn't provide total relief?

[SharontheSheep]

Hi Cindy

It's so weird, my gums have stopped bleeding too! I'm still feeling pretty good on the clexane. Have some spectacular stomach bruises but my head is clear and pain free and all the tinitus and vision probs have gone too. Tired yes but then I am being kept awake by shoulder and leg pains (and my daughter's cough!). I had to fight to get given the clexane so I don't know what hope I have of getting warfarin

Hope you're good

Love sharon x

[CindyCB]

Hi Sharon,

That's weird about the gums! I have such pressure in my head all the time I am surprised it's not gushing out of my nose sometimes

I wish the Clexane has worked as well for me on the cog-fog - I'd give anything to clear my head.