I am really terrified, I am being tested for APS and other things, but only the APS test is going to show anything up, because I had to be given Heparin injections before there was time to take bloods.
Please tell me, I have no idea - what is this going to do to my life?
This year alone I have been in hospital three times, once with a limb threatening arterial clot, another time with a relapse of that clot and a DVT, and then two weeks ago I was hospitalised with pulmonary embolism in every branch of each lung. I'm lucky to be intact - but I need to know what's coming? I need to be well - I have three daughters who need me.
Thank you in advance.
Written by
anniesensi
To view profiles and participate in discussions please or .
It's all this on top of having progressive MS, and various other trials that life sends.
I'm in Tunbridge Wells, I have most recently been treated there, but for the arterial clot I was at Kings, I suppose Kings are looking after me, ultimately.
I discovered I have two specialist appointments and £750 towards tests as a perk on my bank account.(don't know how - I'm always skint)! I am hoping it is enough to pay to see Prof Hughes himself just for the diagnosis.
I can't help but worry - but you are right. It's many because this year has been so difficult. three times I had clots bad enough that they could have taken my life - and I know this is not unique to me, but it's frightening.
I am so sorry to hear that you have been through so much.
Like Lynn I take daily Heparin injections and haven't suffered any side-effects from this.
I think it would be an excellent idea for you to go to London Bridge and see Prof. Hughes. I see Prof. Khamashta.
A consultation at LB is about £195 and as I recall to have all the bloods etc. it is about another £300.
Why not look up the London Lupus Centre at LB hospital and give the girls in the office a call they are really kind and friendly and will advise you as to how much it would cost and who to see. Worth every penny if you can fund it. There Number is: 020 7234 2155
Prof. Hughes is apparently seeing a lot of patients who have been diagnosed with MS but actually have Hughes. I was beeing tested for it myself.
Hope this helps, please let us know how you get on
I have made an appointment with Prof Hughes, so I am confident that no stone will go unturned. You're right about the receptionists - very helpful indeed.
Fortunately, I have a limited amount of private cover - two consultations and £750 towards diagnostics. That should get me on the correct path, and then the NHS can take over with all the info they require. That's the plan anyway.
Many moons ago I suffered an arterial clot and haemhorage at the back of the head causing a massive stroke, whilst in intensive care post op to this I had a large DVT (ankle to knee L leg)and for good measure a PE. You could say I went through the wringer.
all the above occured 13 years ago. These days I work for days a week with wednesdays off still in the same technical job I held pre stroke.
It is not the end of the world. a fairly normal life can be lived if treated and managed correctly.
Oh Annie! You have been through the wringer this year. But there is no use in fretting and it could be harmful. You are at war with disease and you need to prepare for just that. Physically, mentally and spiritually. Is all this disease brand new? It seems to me you are an experienced warrior with disease. But you must ACT and not REACT. Right now you're allowing yourself to react (I feel everyone is entitled to at least one meltdown a year) At age 49, presentation of my first stroke and the ultimate discovery of CNS vasculitis, my neurologist told me he would be surprised if I lived 2 more years and promptly left my husband and I blankly looking at each other in complete disbelief. There were times during treatment I honestly thought death may be preferable to treatment. Every day I woke up the situation was still there, but so was I. I learned not to place faith in the doctor, but in the God that guides that doctors' hand. I learned to look at my confused and devastated children and realize I still had a lot of parenting to do! As a matter of fact, I had a lot of many things to do. The years passed, new diseases came and went and some made themselves at home. Now at age 60, I finally found a rhuematologist who put a LIFE MEDICAL HISTORY together to test for APS. I'm still here. I can't even remember when I felt "well". But my support system keeps me happy almost all the time. I am well aware there are patients much, much worse than I and any morning I could wake up worse or not at all. I could also get hit by a truck! We'd all like to know what's next but, alas, we are forced to take it a day at a time. Each day is what WE make of it. This site has been very helpful to me. It has an array of patients whom have had an array of experiences with this disease and usually others as well. Some are sicker than others. Once your facts are found and you have adjusted to the specifics of your own situation, you will adapt because the alternative is simply unacceptable. Your three girls will always need your mothering. So on the days you can... do your job! On the days you can't, forgive yourself and move on as much as you can. You will wake up tomorrow. I always figured if I didn't wake up.... I was finally finished knowing I had done my best for those whom I loved and whom loved me. I send you prayers, smiles and lots of luck.
Hi Annie, so sorry to hear your fear we have all felt it....whatever level we are all at.
The only real advice I can give is to keep possitive through all this....I know it may seem very dark ahead but what you must remember you have been diagnosed & on medication now so thats a good start.......
It can be different for all of us, the degree of this horrid disease ......so whatever stories you may read on here or anywhere else also doesn't mean you will get the same. Some will have relapses others are very stable........some medications work for some & not for others.......everything is very different for all of us, including some symptoms or how we have been originally diagnosed too.
Your beginning has already been very difficult so lets hope for a calmer future for you hun, please keep possitive & we are here for you xx
I really appreciate finding your e-mail, because I am having a fearful moment. Honestly, I am a very strong positive thinking person, but this has hit me for six. I thought progressive MS was enough of a lesson to learn from!
I actually don't have my diagnosis yet, but I think that it's really a formality that I will be diagnosed with something. I've been in hospital three times this year with major clots, and I just read my discharge letter from hospital, the episode that has prompted the tests.
"CTPA showed extensive pulmonary emboli in both main arteries major segmental branches and a few sub segmental branches. Anti phospholipid levels were sent.... haemalology have advised us that since she has had more than one thromboembolic event she will need to take warfarin long term"
This doesn't sound good, does it? I'm really needing some direct answers, though I suppose that may not be possible.
Previous to this I have had a major clot in the main artery of my right leg with pulses lost up to the groin. Kings College Hospital worked like soldiers for 4.5 hrs to save my leg. They were amazing, and I shall be forever thankful. Then, a month or so later, same thing happened but I was at a different hospital where I wasn't treated well. I then must have developed a DVT - although it went un noticed, was put down to swelling from surgery!
And now this. I can take any news, as long as it's upfront and not sugar coated. Do you think the Dr's will do that for me?
What do you all think - after all, everybody here KNOWS the illness rather than having read about it. Not that I am knocking the Dr's, they have saved my life more than once now.
I'm glad to hear that you are a strong & you sound very sure of what you want too......you have already faced so much....you can beat this APS darkness......I believe in you
As you already know you def' need to tell docs how you feel & that you want some direct answers & not the 'palm me off ones' we sometimes get!
Unfortunelty we can give you advice, be there for you, but we cant give you the medical side of it as we are not docs' ourselves.....we can only give our own experiences & hopefully show you in the right direction.
Keep strong & yes these sites are a god send to many.....including myself 11 years ago, there is another one with a lovely lady Hazel that runs it.....she is fantastic & a huge inspiration x
I can only echo what Suze has said and I too am in eternal gratitude to Hazel for the support I have received not only from the support group but also from her personally.
I am pleased that the information regarding LB was useful to you.
If you ever need to chat e-mail me and I will give you my number.
Looking forward to hearing how your appointment goes.
I suppose what I want to know is this. It's the thing that's the hardest for anybody to know, and the thing I need to know - is this going to kill me? Are my presenting symptoms a surprise? Is this all par for the course for everybody?
What can I do to make sure the first on the list doesn't happen? Is there any way of being sure?
Hi everyone, so sorry I have not posted in a while, I've been having trouble coming to terms with things - plus feeling so poorly.
I thought, as you have all been so kind to me I would let you know where I am at. I've now got my diagnosis.
My MS is definite, and in the progressive stage
I have been diagnosed with APS, and I discovered (since my last hospital stay for ischemic foot) that I had a stroke in 2010 which was undiagnosed. I was told "It's just your MS"
I have now also been diagnosed with SLE and a "rare type" of anaemia.
My memory, and energy levels are so bad that I am seriously doubting my ability to continue with my studies, do you think that the worsening of y memory might just be extra stress? (whilst I was in hospital I missed benefit renewals, and so literally ALL my money has stopped for the time being - mortgage etc. went unpaid this month.
Or, is is possible that the combination of auto immune diseases are affecting my memory?
I have never been the same 'me' since my stroke (I was 33) The stroke has affected my memory - but surely once the stroke has done it's thing it isn't progressive memory loss???
MS also affects my memory - in part due to the fatigue, and, obviously APS and Lupus bring their own brand of fatigue with them...
My INR is meant to be between 3 - 4, however it jumped from in range, to 8 overnight, and then down to 1.6 overnight. I have been switched from Warfarin to Acenocoumarol with Clexane if I drop below INR of 3.
I am such a positive person usually - but I'm too tired to be positive at the moment. I don't want anybody else to have all this, but if I knew it was quite usual I'd feel better... Of course, I have been forced to realise my mortality. That's just a fact I've had to realise, and with three daughters, it's not easy to face up to that.
I've had an MRI of my spine recently, in part to check on my MS progression, and also to check on the mild scoliosis that I was diagnosed with as a teen!
moan, moan, moan. I am so sorry to sound like I am moaning - I only want one thing. Well, two things. I want to be safe and well, and I want to walk. I miss so much how easy it used to be to walk. It was like breathing. It used to be something that I just took for granted... now I feel like I'm just a nusiance all the time...
I do apologise. I hate sounding like this - but where else can we let things out to people who really do understand, and who care to listen?
Thank you. It's awful for everybody, and I know I am no different. I just want to be normal.
I had to tell my brother I can't go to his wedding on Friday, because my INR's are so unstable, I feel so ill, and I am afraid to be too far away from St Thomas'.
I hope that things settle, and I will feel braver again.
I also hope that you are all as well as you can be. I do feel very self centred for letting it all out like this... please don't think me a miserable person. I'm just afraid.
Thank you so much. That's a really sensible response, and I agree with everything you are saying. Sometimes, I wonder WHY do our bodies turn on us? Why is it that my body is trying to kill me? It's as if at the moment my body isn't connected to my brain... That's something to work on!
i'll see if there is some way I can see the wedding live! Thank you for that!
As for my studies, I really feel I need to try. If I don't, then I doubt I'll get back into it all... I'm studying photography, and whilst it is a full on course, it is also something I really enjoy. That said, you don't need a degree to be a photographer, you just need to be one! I will do my best, but I will forgive myself if I can't manage.
Sometimes it takes somebody else to point out these things, that I have so much on, and taking everything a day at a time really IS what I need to do. Otherwise it's all just "what if" and "when" and "how".
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
we have all felt it....whatever level we are all at. 
Episodes of vision loss...
Has the APS criteria changed? New doctor now saying I don't have aps!
Warfarin Question and what to do next, advice please
Do APS sufferers bruise easily?
Catch up
