Recently Diagnosed and started Treatment

[marco_mustard]

Hi Folk,

I have been lurking here for a few months. Now delurking. Am a 62 year old man. Because of a whole raft of symptoms - gut problems, breathing difficulties and a lot else I got a private blood test last year. It was high positive for IgM and borderline for IgA. Saw Professor Kamashta at St Thomas's and he diagnosed APS.

The second blood test confirmed the first and I did have a proven clot in the leg in 2002.

After a bit of a wait - I have been given warfarin by the local Anti-Coagulation clinic in North East London. The haematologist registrar was very doubtful that it was APS. He said it was not - but he only had a fax from the GP - and was assuming it was the GP who diagnosed it. I've now given him all the paperwork.

Anyway having been on warfarin for four days - the difference so far is spectacular. I can hardly believe the refreshing sleep I have been getting. Energy levels are doubled and many symptoms seem to be clearing up.

[MaryF Administrator]

Hello, and welcome, I am so pleased about your diagnosis in terms of you receiving the right treatments. If you find out the secretary's email addresses for both haematologist and the GP, you could send the the charity website which would enable them to see the full range of symptoms and also the scope for medication. hughes-syndrome.org/

Let us know how you get on. MaryF

[Lure2]

Hi I can understand your delight when the life is changing. I had the same experriance after an hour Everything was more clear. I could read again. It was a miracle. After 2 months most of my neurological symtoms had diesappeared for good. This was almost 3 years ago.

congratulations from a person who understands your delight.

Kerstin in Stockholm

[Manofmendip]

Welcome

I'm Really pleased for you that you have a diagnosis and that you are finding such and improvement on Warfarin.

Best wishes.

Dave

[GinaD]

Congrats! It does seem like magic, doesn't it? Some docs call it " killer coumadin" but for me, it is a miracle drug! Headaches first dramatically reduced, then gone completely! Balance restored. And no more terrifying mini strokes!

Congratulations!

[Lure2]

Hi Gina,

Yes we are lucky indeed. Kay Thackray had the same experiance Because she had written "Sticky Blood Explained" and I read that book I started warfarin. I even know which page it was!

Have a nice rest of the sunday.

Kerstin

[Heather69]

Warfarin is a great drug.

[marco_mustard]

Thanks for the kind words folks. Great to get support and be among people who don't disbelieve!

I thought it likely that warfarin would be effective. I was admitted to hospital about four times in the last two years - once for elective surgery and three times for some aspect of what turns out to be APS. Routinely they give heparin injections to prevent clots. And the symptoms disappeared in under an hour.

First I thought it was my imagination. Then I knew it was working. Asked an Emergency Medicine consultant to continue this - or warfarin and she poo-pooed the idea saying "There is no possible reason why heparin would help" breathing problems, joint pain, chest pain, headaches etc "aside from making the blood flow a bit easier." So yet again the opportunity to get diagnosed and treated was gone.