Confused

[ccurrey79]

Well today I had my follow up rheumatologists appointment. My latest blood results have come back negative for Aps but my vitamin d was a little low, so I have been prescribed a maintenance dose. I was diagnosed with primary aps in 2006.

My joint pains are still bad and although at my first appointment I was told I probably had early onset arthritis my consultant has now said I have Fibromyalgia.

Has anyone else been diagnosed with this alongside aps?

[MaryF Administrator]

Please be aware that Fibro, is often Thyroid problems, the diagnosis of thyroid disease is poor, the medical training is scanty and the tests are downright unreliable. Often the trio of disease is Hughes Syndrome/APS, Sjogrens Disease and Thyroid Disease. It took ages for mine to show up! Also, the tests for Hughes/APS can be negative at times, but it does not mean that it has gone away! At another date, you will probably get a positive again. Re the vitamin D, this is good, that is has been picked up, and it will help to restore to the correct levels. MaryF

[Lure2]

I wonder if you have an APS-specialist with full knowledge of the trio of diseases that MaryF describes? An APS-specialist would certainly know how difficult it can be to distinguish those three with tests etc.

Best wishes from Kerstin in Stockholm

[ccurrey79 in reply to Lure2]

Thanks for your replies. I don't yet have an APS specialist but am going to see if I can be referred to one, having recently changed medical practices I'm hoping someone may be on the ball. With regards to the Vit D, this is the 2nd time in 2 years it has been low and this time, I had to fight to get treatment even though the request was made by the consultant.

its a real shame we have to fight so hard

Claire

[Lure2]

Hi Claire,

I do agree with you. Why must it be so difficult for us to find the right doctor? In the near future every doctor will know what APS is.

I can now only wish you GOOD LUCK and the strength to keep fighting to find that doctor!

Kerstin

[nettie545]

My son has supposedly had Fybro for a number of years and now his blood tests have shown that he has 'stickly blood'. From what I've read on here that means he has APS does it? I've only read about sticky blood once and that was on this site, so don't know much about all this. He has also been told there is something wrong with his liver, but they don't know what. Needless to say, i am worried sick about all this.

[Lure2 in reply to nettie545]

I am sorry your son are not feeling well but he has now got a diagnose. That is very good. Many of us on this site have had to fight for a diagnose. Now he has to have an APS-specialist. There are so few doctors that know of this illness. That is very important.

There are books available on Hughes Syndrome Foundation charity website. I prefer (I have it in pocket) "Sticky Blood Explained" by Kay Thackray. That is very good especially also for relatives!

See also Hughes-syndrome.org about signs and symptoms etc.

Best wishes to you and you son from Kerstin in Stockholm

[nettie545 in reply to Lure2]

Thanks for your reply. I appreciate the help. Best of luck. Lyn