Feeling confused and/or a fraud

Hi Everyone

I have been really sick since Dec 2014. Lots and lots of tests and Dr visits all last year, my GP sent me and all my test results to a "diagnostic specialist" who told me I had APS and put me on Xarelto immediately. My symptoms/history:

35yrs chronic migraine with no family history of.

2 miscarriage's

Pre-eclampsia during pregnancies

3 TIA's

pulmonary embolisms

diagnosed neuropathy

have tingling/numbness, blurry vision, increased migraines, constant sweating, stumbling, chronic fatigue. The joint pains are chronic and have severely limited my mobility.

My GP sent me to an Immunologist, the only APS specialist* he knew of, who had me take another blood test. He says this last blood test was negative so therefore I DO NOT have APS. I am very stressed and upset as I have no treatment other than anticoagulation. There is no APS specialist in Brisbane Australia and I cannot afford to travel over 1000km to see one at the moment.

*He is not a specialist per se, but treats APS patients.

At first he said I could be seron negative, but later in the consult said "seron negative" was just what doctors lumped all people with "unexplained symptoms" under. I just want to know what is wrong with me so that I can get some sort of treatment and get on with my life.

Thanks.

5 Replies

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  • Oh dear test results can go in and out of positive/negative testing. You are currently on an anticoagulant, I hope they keep you on that, you can get your GP to thoroughly test your adrenal function and also your Thyroid and at the same time, do your Vitamin D, B12 and Iron. I also suggest you write to your new specialist, with history in bullet points, enclosing any previous positive test results. Please do not give up, keep pushing, and try and pull in any favours from friends and relatives to help you reach alternative care if necessary. MaryF

  • Ok I was diagnosed with Aps a year after my second stroke as I tested positive twice, that's it you're positive for life, it doesn't go away no matter what. Once coagulated with Warfarin I have tested negative, dunno why they continue to test for it tbh but they sneak it in amongst other tests. Your Doctor doesn't know what he's talking about, he's not alone unfortunately. I kept being told the sweating was not an Aps symptom and it was so bad at times it dripped off my hair. It's since been discovered I have polycythemia and it is a symptom of that, basically my haemoglobin is way to high and climbing it also has a lot of similar symptoms to Aps and looking back at blood test results with my Gp recently it's been overlooked for years, it got lost amongst all the symptoms they were so busy dismissing. It's only been picked up recently because I developed vertigo, couldn't focus my eyes or brain and fell over in the shower. Your Doctor needs to do some homework, my GP has taken it up on himself to learn as much as he can about Aps as he can't help me otherwise. The information is out there and he needs to look it up, ignorance is no excuse for misdiagnosis. You could print the info on the charity website off and give it to him.

    Be persistent and good luck x

  • Thanks Dobie; I realise a lot of people are worse off than I am. Mary makes some good points, I will take some of the print outs with me on my next appt. x

  • CFS is only just being realised as a 'real' condition (instead of just being lazy!) and it can go hand in hand with APS. Could be worth your while to get in touch with St George hospital in Sydney and ask for Prof Steve Krilis secretary and ask if there is someone that they work with/know of in Brisbane. He is a colleague of Prof Khamashta in London (or Dubai) and would be aware of specialists around Oz. Anti coags can also vary from Person to person and unless this is spot on you will still continue have symptoms that are "unexplained"

    Hope you have better luck soon.

  • Thanks Ozchic, will look into that.

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