For years and years I have struggled with symptoms. This time last year my neurologist spoke with a thrombotologist about the scars from my stroke and many TIAs. Bloods were ordered and re-tested and they came up positive for LA & APS, with a query over SLE too. One year on from then I am finally coagulated and on Plaquinel. Several consultants have tried to say I have neither condition, on the back of a disastrous letter from an ex-consultant at St Thomas' which was all about discharging me from the unit Prof Hughes established, and off their books.
Over the last year I have doubted my own views on my health and what is wrong with me.
But finally my thrombo (officially confirmed and started Warfarin in November last year) re-confirmed my APS with a remaining ?SLE diagnosis and has written a superb letter slating the letter from St Ts and the subsequent brush-offs I had along the way from other rheumies and so forth. My neurologist is keeping me under review because he is concerned about the effects on my brain and neuro system.
It is a good job I didn't trust the brush off from St T's - who told me to stop warfarin, take aspirin but there is basically nothing wrong with me (I knew there was). I could be dead or severely paralysed now!
I have also got permission to try an anticoag machine to home test, as the APS means weekly visits to the hospital (at least) to test my INR. It has become a quality of life issue now. My GP has agreed to prescribe the strips, and the machine is on order!
I am immensely grateful to my neurologist, new GP and the thrombotologist at my local hospital, which is at threat of closure thanks to this governments top down closure plan for so many of our hospitals.
But most of all, I am just really glad that I am not left doubting myself and my symptoms any longer. My old GP told me I "don't want Hughes or SLE" and basically dismissed my worries and symptoms - well, of course I wouldn't chose to have them, but since I do they need treating!
It seems I have some form of LN, which I am keeping a close eye on. Unfortunately the nephrologist I saw who was in agreement it was probably a manifestation of SLE has moved on, and the subsequent consultant I saw for that read the awful letter from St T's and dismissed my evidence.
Thanks to all who have supported me and others on this website. At times it felt that I was losing my mind and/or becoming a hypochondriac
It is an enormous relief that I am now under the watch of good doctors and that thanks to this letter I can get put back on the books of a nephrologist (local hospital has London's leading kidney unit and is also under threat of closure) so we can treat the next flare which causes me to pee frank blood with the appropriate medication. To even know that when we are next ill we can get some treatment is great!
On the whole it keeps the dark feelings and thoughts of having chronic illnesses at bay, but some times I succumb of course.
So I would urge everyone to trust their instincts and never give up on getting a diagnosis. If your GP is not supportive, find another one at the practice or elsewhere (my new one is amazing, my old one at the same practice recently had a stroke himself and is gradually retiring now). And keep the faith that you will eventually get the care you need. As House said: "Sometimes it IS Lupus". Dangerous dismissal of these conditions is awful. It puts your health at risk, and makes it hard for us to secure support from families and friends which we all need as we learn about what is wrong with us.
And thanks to all on here - you are all excellent. I also am eternally grateful for my excellent and supportive GP, thrombo and neurologist. Eventually we can get the health care we need!
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Bonnie39
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Hi there, I am so pleased to hear about your progress with the medical letter writing and confirmation of what you and some already knew. Terrible that St Thomas' as a teaching hospital let you down so badly. I am always careful to fill in feedback via NHS choices stating when I have had good care, I also feel if appropriate to feed back what is not good in quite considerable detail. The Care Quality Commission does look at the feedback I am led to believe. Great to hear good news for a change regarding a neurologist. I hope you continue to maintain more stability with all the correctly diagnosis now in place. Thanks for taking the trouble to fill us in with considerable detail, it is your determination that has got you through! MaryF
Oh my god! Just read my post back and I am shocked how long it was! Well done for reading through it and sticking with it! Was really only meaningoto say we have to trust ourselves with our bodies! Thanks for the kind words. X
Many of us have had epic journeys from symptoms to diagnosis which involved horrible, machete drawn, whacking treks through Amazonian jungles ofdoctor doubt, condemnation and obfuscation.
One doctor I had, who by turns was weeding and then watering that jungle, told me that there is a clear connection between auatoimmunity -- particularly systemic autoimmune diseases such as APS and SLE -- and stress. So, many doctors think the stress creates the autoimmune diseaase and that the proper treatment of underlying cause is for the doctor to reassue, calm and tamp down any patient fears about long term chronic disease. (or suggest therapy and trunquillizers.)
Which does explain why a lot of doctors are so unsupportive and intransigent.
But as I pointed out to that doctor; there is (from this patient's perspective) a more likely scenario that the disease is causing the stress, or both are caused by the same underlying fault in some system (autonomic nervous system? -- thymus hormones?)
And what happens when doctors keep trying to tamp down our fears, is they actually make the stress worse.
But congratulations. Hopefully you've made it to the civilized port and you'll never have to turn and whack through the jungle again!
For good? Who knows? My wonderful GP has retired from private practice (2nd child meant she and her husband were being forced to ocmpromise on their family duties -- which they chose not to continue to do. Good for them!) I meet my new GP August 1.
I will probably have to contend with the missing positive blood work from the years prior to my going gluten free. But you know what? I don't give a ping! My a fib and heart valve issues require me to be on warfarin with an INR Of 2-3. So, if the doctors think I actually had a high platelet count due to a low RBC count (I did once, -- but then the platelet count fell to normal, and instead of getting better, the clots got worse.) Or tht I am a nutter and managed to construct TIAs and mini strokes out of my own neuroses -- I don't care! I have my warfarin. I'll stay on it..
In other words, I have found a short cut around the jungle
.
And speaking of Amazonian jungle, I have often said that if I have to, I'll install grow lights in my basement and cultivate the curare myself, I'd be growing my own mini-jungle!
Hi Gina, Hope your new GP will be nice also. Anyway you stick to Warfarin. Good! I saw my Rheumatologist today and she did not like that I let my INR go so high. I agree with her. I am a bit high at the moment.
That would be nice to grow an own mini-jungle. That would be perfect for the weather here in Sweden at the moment.
I completely agree. I have about 2-6 good hours a day (that's when not in a period of flare-up). During the the other 18-22 hours a day, I'm in bed or trying to conserve energy as much as I can. I for one fight the guilt of not providing my family what they deserve. Holding a job is out of the question when there are times when I literally crawl up the stairs as if all the blood has been drained from my body. It's not sleepy tired -- it's as if my cells are screaming out in pain that they are dying from fatigue.
I can feel when my body is getting into this extreme. During these times it's imperative that I get in a position to lay flat (horizontal) as soon as possible. I agree, the health issues are creating the stress. During the good hours, I try to make up for the down time -- but there is never enough time to make up for what is lost.
Hi, You can read about it in "Hughes Syndrome - A patients guide" by Graham Hughes. Chapter 12.
It is difficult- My APS-doctor told me that I could have parts of Lupus (SLE).
I quote from the book;
"Lupus (SLE) affects females more than males(9 : 1) and at a relatively young age.
We Went on to show that aPL were also found in patienst WITHOUT lupus - a syndrome we named the PRIMARY ANTIPHOSPHOLIPID SYNDROME.
There is a overlap. Depending obviously, on the sensivity of the tests, proportion of lupus patients (perhaps 20 %) have aPL and features of the antiphospholipid syndrome.
This leaves on either side, two large groups, one with "classical" lupus, and the other with "primary APS" (i.e., no evidence of lupus).
So...Am I correct to gather that this ex-T consultant was fired not he has simply left? It seems many of us had a horrendous time with this condition and had to fend ourselves off when we had to endure ignorance of doctors who were supposed to help us.
So..this guy actually ignored all your antibodies???? Have you complained yet?
Generally speaking, if you are seronegative then it's much harder to get a confirmed diagnosis. But if you had antibodies all along, then how on earth this ex-T doctor had missed that? Having said that this type of negligence happens all the time even at the top London hospitals (in my own experience). It is a constant battle in my view. They are well protected by lawyers provided by GMC - doctors aren't pressured to change their way of treating patients as if we were "id**ts".
No, this doctor left, along with four or so others prior to the unit's relocation to Guys. I was disharged by him at his very last clinic and his letter caused all rheumatologists since to disregard my bloods and symptoms. Thankfully my thrombotologist saw me before him and diagnosed the APS. This ex Ts dr even told me she was wrong and told me to stop warfarin! The letter my thrombo has written basically says he was talking nonsense and sets the record straight for my future rheumatologists. I had faith in my other drs and myself (tho it wasnt always unwavering). I am so glad I am in her care, and hope other people on this journey and hope this experience encourages others to keep pushing.
Bonnie
One day, Karma boat will hit these useless MDs..I often do think some doctors are downright mean as well as simply "stu**d" and they seem to try to harm/demolish patients and his/her credibility. That's how they come across as. Having a medical degree wouldn't exempt them from having a sick personality disorder. I wish doctors are forced to be far more accountable to us patients - but sadly, we all know some of them simply don't care. Good ones exist but they are sadly much rarer.
Doctors are only ordinary people like you and me. They love to hear that we are satisfied with them. As all people do. They are also afraid that they will not understand if the illness is unusual, like APS is.
Therefore we must look for a doctor that knows APS and is willing to listen and even understand that we are not mad. He is not afraid. He is eager to help. Some of them are also very interested (if he is not afraid that he will not understand).
It is difficult to find an APS-doctor. There are very few of them. But it is up to us to understand what we must have and fight for it. It is also up to us not to give up on ourselves. That is the worst thing a human beeing can do to himself; (There is a Swedish expression for that but I can not translate it)
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Hello I have Hughes Syndrome!
A really nice Neurologist - and yes I am telling the truth!!!
Haematologist still says my migraines have nothing to do with APS/Hughes
Am I now triple positive?
