How I got my (sort of) diagnosis...

Well,

Picking up from my post about diagnosing myself on the Internet over Christmas 2007, remembering my Dad's sticky blood and having the conversation with my GP who knew nothing of the condition, I had a quest - to get in front of a doctor who knew about Hughes/APS/Sticky Blood and then get my label of diagnosis and everything would be ok...that is supposed to be how it works...

Firstly I made a private appointment to see Dr Khamashta at London Bridge hospital, I had to wait a few weeks, but I had my blood tests done with my GP and I took them with me on my day trip to the capital...it was like waiting to see the Wizard of Oz and have all my dreams come true..I was sadly disappointed..

The journey was stressful down to London by train and there was a suicide on the line that day (Valentine's day), so all trains stopped at Luton and we had to get off and get on more trains to avoid the issue...it made me over an hour late, getting into St Pancras and I still had to get a taxi for another 20mins to get to the London Bridge Hospital itself!! I phoned them during all these delays and explained the situation and thankfully Dr K agreed to stay later and see me, bless him!!

I saw him, he is a charming and very charismatic man, born in Bethlehem and I sure think that he is Jesus Christ Almighty! He examined me, took a full history of my problems and my family medical history...then said that my results for the APS antibodies were negative..my blood was saying that I don't have Hughes Syndrome...how can this be?? I was distraught and he comforted me, he explained that he would do the tests again and he would ring me with the results himself when they were back in a weeks time...He did ring me back, the results were still negative..he asked me to speak to my GP about this and maybe go back and consider a diagnosis of MS...I really was not sure that this was the case, but I was waiting for the results of a brain MRi from the neurologists within the NHS and this would tell them..The brain MRi was clear..no MS? Could I have Hughes but have negative blood results - it was a possibility and I needed to be tested again after 3 months...

In the meantime I saw a rheumatologist locally and he again took blood tests and examined me, but concluded that I didn't have either lupus or Hughes because of my negative bloods and that his thoughts were that my degenerative disc disease was the cause of my ill health...back I went to the orthopaedic surgeons...they did a nerve root injection which did not improve matters - no point in operating, the nerve was damaged and was deteriorating...still my "Hughes" symptoms persisted...

I went again to see Dr Khamashta and he agreed that the symptoms and more importantly my family history strongly suggested Hughes, he could see the full picture and he decided to diagnose me as being sero-negative for Hughes Syndrome - meaning that I had all the symptoms and family history, but the blood results were negative..He advised a treatment plan of aspirin, plaquenil and maybe move towards a blood thinning agent - heparin/warfarin in time. This treatment, he explained would help to protect me, alleviate some of my symptoms and give me some hope..

The rheumatologist refused to administer the treatment plan locally as in his opinion he did not believe that I was suffering with Hughes, so I had to be referred on the NHS down to St. Thomas's to be seen by Dr Khamashta in the Lupus Unit. I got my treatment plan and I have been on it since last September, I am improved. The medication does take a while to take effect though and for the benefits to be seen.

I was reviewed by one of Dr Khamashta's colleagues in April of this year, he agreed with the diagnosis, adding in that I had the symptoms of Lupus and Sjorgrens Syndrome as well as Hughes due to my skin rashes, nail splinters, hair loss, dry eyes, fatigue and bone/muscle aches and pains. I got a depromed (steroid) injection and he has upped my anti malarial and I will be seen again down there next April...I am much better than I was before my treatment plan was administered, but I will always have Hughes and it shows itself every day - mouth ulcers, thinning hair, sun sensitivity, temperatures, dizziness, etc. etc. I am not well enough to hold down a full time job or get to a place of work ready to start the day by 9am, but I am capable of earning a living working from home, undertaking sufficient rest breaks and taking things in my stride...I still have to save energy for the kids, being with my husband and spending time with family and friends...I do my best, I get frustrated, but I battle on. Having Hughes is one long battle that you have to keep fighting...

I will pick up again in a couple of days...thanks for following this, I thank god for the Internet too!! Those girls at the Hughes Syndrome Foundation saved me from going mad! Just to let you know, they are updating their site, so it may not be showing at the moment, but please do go back as they are a great bunch that will help you enormously like they helped me..

Much love

Wendy x x x x