Just diagnosed APS, Already have MS, Need support and advice please

Hi, I have MS, I was dx when I was 28 - now 37. It is a definite diagnosis. I had what I thought was a killer MS relapse 2 and a half years ago, and have been in a wheelchair ever since. I had a CT scan, told no, not a stroke and home I went packed full IV of steroids.

Then, last October - I'm now 37, I had an arterial clot in my leg, almost a full amputation. I have since had 3 more aschemic attacks and two lungs filled with blood clots.

So, this has been one event after another since October. I was still on bed rest for the PE's when I was ambulanced to St Thomas's for another clot in the leg.

I had an MRI at St Thomas' which showed that the MS relapse, that the paramedics believed to be a stroke, but was not picked up by the particular dr I saw, was, indeed a stroke.

Is it usual to have so many clots in such quick succession? Is it unusual that my first clot was a stroke, age 33?

I suppose I'm asking the impossible. I'm looking for a prognosis. I'm really scared, but I can take on anything if I know what it is.

Also, I'm normal weight for my height, but needing 12mg warfarin and 2 injections per day of Clexane just to keep my INR up. I have to have an INR of 3 - 4. I have been put onto a low dose statin even though my arteries are not firred up.

And the MS marches on obediently with this new APS.

Thanks all for listening.

Lastly, every nurse, doctor, pharmacist, dietician, physiotherapist, neurologist......... that saw me at St Thomas' were the kindest, most professional people I have ever met in my life. Thank you all, if you ever look here.

22 Replies

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  • Hello Annie and welcome to this Forum. Im so sorry to hear about your journey to this point and the problems that you have been encountering.

    The good news is that you have gone to the best place where many of us have ended up and will agree with your sentiments about treatment and care there.

    Its very difficult for us to answer what you are asking but there are some very encouraging stories on here so Im sure others will come along and encourage you too.

    Please try not to worry too much you are now under one of the best places in the world if not the best place in the world for APS. I know that is easier said than done.

    Many of us are also taking statins, including myself but I too am not furred up but do have to have them because of high cholesterol.

    Just try and take each day as it comes as best that you can and we are here to support you and answer any questions you may have if you want to pop back when you need to too.

    Big Hug x

  • Thank You Lynn. x

  • Annie, Did they tell you that the MS may all be Hughes? I know that Prof Hughes believes some percentage of patients with MS actually have Hughes and improve with adequate anticoagulation. I hope that will be the case for you!

  • Hi Sally, I had a repeat MRI, and a Neuro came to see me whilst in St Thomas' for that reason.

    Because my MS dx was based upon lumbar puncture and MRI she agreed that my MS is primary, APS is secondary.

    The MRI showed up a few more MS lesions and one stroke.

    Thank you for your message,

    Annie x

  • Hi Annie welcome to our forum ;-) i am so glad you have found us we are a big friendly family on here where we get to rant, share sad news, and plenty of good news too plus lots of interesting articles gets posted.

    You certainly have had a difficult journey you sound an amazing strong person with lots of fight ;-). Do you live near london? many of us travel to st Thomas's to be seen in the lupus centre. As Lynn mentions i pray and hope you see improvement once fully anticoagulated.with your MS hun, although i note you said it was a definate diagnosis - APS is so complex with so much research on going we can only hope more is learnt about the condition and further links to many other conditions giving a clearer prognosis. I have had APS since 1990 when i was dx at 24 due to clots on the brain in pregnancy. More recent complications but i think now is linked to my age and hormones ;-) i am currently awaiting blood results from st t's so give me a clearer picture of my health issues one being chronic fatigue and muscle joint pain oh yeah and memory issues - i always forget that one ;-)

    Dose of warfarin varies amongst us all so to be of normal weight and require 12mg warfarin is very individual so dont worry to much of the dose as long as it keeps your inr within range. Do you have a history that you can now relate to APS before the MS? migraines joint pains fatigue etc? sending you love and hugs take care kathy xxx ps look forward to hearing from you soon now you have found us xxxx

  • Hi Kathy,

    thank you for taking the time to reply.

    It's become difficult to know what is MS and what is APS now though - I know I'm in so much more pain, and I feel 'frail' which is just NOT me at all!

    Re the Warfarin, my target is 3 - 4, and with 12 mg warfarin and 2 clean injections a day I was disappointed to see my INR is still only at 2.5 I know these things take time to stabalise, but I'm wondering if some of my much needed MS drugs are interfering? I take, amongst many other things 2mg clonazepam and 18mg ropinerole per day.

    I am going to see Prof Hughes on the 27th (I think) so I hope he will be able to answer me all of these questions.

    Meanwhile, the support here is amazing. Thank you.

  • ps its not unusual to have a stroke as your first clot or sadly quick succession of clots - its like an avalanche it seems in some - what ever triggers the initial clot can wrek havoc through your body until the clotting comes under control - what is amazing is how we all present to the doctors differently thus leading to alot of inaccurate diagnosis due to the complexity of APS and lack of knowledge from the varies specialists - so many people struggle for decades until they are finally diagnosed and many more out there still have not had the correct diagnosis.

    Thats why Lynn was wandering if your MS is in deed due to the APS as patients get treated for many years for MS as APS can mimic the symptoms it even fools the cleverest of neurologists - thank fully with the campaign to raise awareness even in the last year i have been a member i can report a lot more information and general improvement on knowledge amongst GP's and interest in this condition - but its seems understanding the depth of this condition is still very much at the early stages considering it was only described in 1980's. I feel like a guinea pig ;-) to this condition and follow the research with such interest as according to ST T's my presentation with cerebral clots was very unusual & they were v impressed my neurologist at the time pieced my history together and published it in the BMJ back in the 90's - i have had more recently TIA's but MRI confirms i have not had any stroke -

    Every year they hold a patient's day at ST Thomas's, in the month of May - i went for the first time this year it is so worth the trip if you can make it - here you will be in the company of many APS experts and of course each other ;-)

    love kathy xx

  • Hi Annie. And welcome! And yes, this is a disease that can hit suddenly like a ton of bricks. Weird. Hang in there.

  • Hi, thank you for your welcome!

    Annie x

  • HI there my name is Angela I have had M.S. since 1997, loads of neuros agree on the diagnosis, one even uses my mri scans in demos, this year back op which in turn resulted in dvt, losts of blood test later, conformation of A.P.S. lucky me, so now my hemotologist is arguing with neuro, who does not agree, so as of the moment not being treated for A.P,S, i really do not care what my illness is called, just want to be treated the best for me, so I have told them all I have booked my holiday in december, which is a long haul flight and I am off to do my most favourate thing in the world which is diving with Mantas whale sharks and all the beautiful world under the ocean, just before they all say no you cannot gom I have one life and will live it the best way I can I will not let my illness take over, keep fighting to be the best u can be.

    Angela xxxxxxxxxxxxx

  • Miley, you are brave.

    Please, please be careful... I have not have positive bloods for APS, but my history screams it, (as spoken by a consultant at St Thomas') It's prob because I needed IV blood thinners more urgently than a blood test, so the APS didn't show.

    I whole heartedly applaud you for your strength, but my APS was sudden and life threatening. I almost lost a leg from a simple fall from my wheelchair, it was just a bump. And after a short haul flight I had major PE'S in both lungs, arterial and venus.

    So, here's the newbie giving advice - Look forward to doing the things you love - we have to - but please, lease don't risk your health over it. Maybe find out if your blood needs thinning fist, and then do all the things you wish to. I'm realising that MS and APS need a different type of TLC. I'm just worried about you getting serious clots because the dr's are bickering over who is right... I can't see the point in your neuro and your haematologist arguing over this. This is your life and you must be be to live it to the best.

    xxx

  • Hi Annie so glad you are getting involved with our group, all opinions are welcomed as all advice can help somebody.

    Im also pleased to see that you are off to see Prof Hughes soon. If you liked all the Dr's at St T then you are going to love him too. He diagnosed me after my Stroke and I owe him a lot as I was seronegative at the time. He put all the pieces together in the puzzle and when I see him he just makes me feel so calm about it all. Hopefully he can do the same for you too.

    Ive just read your other Blog on here too. I know you are full of questions at the moment and thats so understandable, hopefully once you have seen prof H a lot of those questions will have an answer and you will feel calmer about things with a clearer pathway to consider.

    hang in there till then and try not to put too much pressure on yourself in the mean time. x

  • I am glad, too that you will be seeing Prof Hughes, Annie. Please let us know what he thinks! My INR was always extremely erratic and after a few months, I went back to lovenox. It feels much safer than having wildly fluctuating levels and you never have to go in to get your INR checked! Just something to consider if you continue to have trouble.

  • I am glad, too that you will be seeing Prof Hughes, Annie. Please let us know what he thinks! My INR was always extremely erratic and after a few months, I went back to lovenox. It feels much safer than having wildly fluctuating levels and you never have to go in to get your INR checked! Just something to consider if you continue to have trouble.

  • Hello and welcome,

    I was diagnosed only 4 years ago following being investigated for MS. I saw a neurologist in York who said I didn't have enough symptoms for Hughes Syndrome (I had apparently tested positive for APS).

    I had never heard of it but knew that my Mum had died due to complications caused by Autoimmune Disease, Vasculitis and Connective Tissue Disorder. Unfortunately we only found this out two weeks after she died as her GP had been insisting that all that was wrong with her was 'a bit of a tired heart' and was treating her with diuretics probably the worse thing he could have done.

    Long story short I looked it up and it was like an epiphany I had nearly all the symptoms! I went privately to see Prof. Khamashta at London Bridge and he confirmed that I had been suffering from TIAs, that I had Small Vessel Disease and White matter damage in the brain.

    I moved to Somerset and now see a different Neurologist who informed me that my MRI and symptoms are virtually identical to MS. I now take 80mg Clexane daily but unfortunately still suffer from TIAs and and a lot of other symptoms. I go to see Prof. Khamashta at St. Thomas'.

    I hope my experience is helpful to you and I really hope you will get some more information when you see Prof. Hughes.

    Keep in touch and let us know how you get on

    Take care x Sue

  • Hi, I see the head of Rheumatology at Swedish, he says Hughes mimics MS. My brain scans looks exactly like M.S. but I have Hughes NOT MS, I have neurological symptoms because of the the mini-strokes.... wonder if you have been mis - diagnosed.....

    Lisa in the Northwest

  • Hi Annie,

    I'm really sorry you have so much you must fight against. But I have to say that your positive attitude and the strength of spirit you show is absolutely tremendous and will carry you through.

    I agree, I am also a person who wants to know and feel I can combat anything if I know what it is. I've had serious medical issues for 23 years, just diagnosed with APS 4 years ago but know now it has been the underlying situation all along. But, being a fighter makes all the difference.

    And, having good and kind doctors and nurses is the second thing which makes the difference!!

    Sending so many good wishes your way!!!

    Leigha

  • Hi Anne

    Don't worry too much about the recurrent clots - no guarantees but hopefully the worse is over now you do have the diagnosis - I'm assuming you either weren't on anti coagulants - or even if you were your INR was 2 or less? Also you now know what symptoms to get concerned about - don't worry about over reacting - if in any doubt get it checked out (remember you have every right to be anxious! if the doctors/nurses were in your situation they would be anxious too)

    Another thing you mention bed rest...which is a risk factor for clots..wouldn't have helped your case ...

    I test negative and might have been misdiagnosed - but I seem to have had several clots within a few months -20 yrs ago - and nothing every since - now only on aspirin and (touch wood) ok...

    The argument for me never having APS (although I did apparently test positive twice then) is I had multiple risk factors: long haul flight, smoking, conceptive pill, dehydration and ... bed rest ...

    Although missed at the time it is likely I got a DVT in my left leg on outward flight, 3 weeks later after return flight a PE (diagnosed as pneumonia)...so long term bed rest, then a few weeks later I got salmonella (dehydration and more bed rest), followed by (almost 3 months after my flight...and the PE had helped (?!) me cut down considerably on the smoking ) the massive DVT in my right leg in that led to my diagnosis...

    This was age 24 - I met someone in St Thomas's that was diagnosed after a heart attack at age 18...a few years ago I was told I was 'lucky' I had my big clot so young -my blood return in my right leg is near normal now - I hardly limp at all and don't need a compression stocking anymore (and just after my mobility was so bad - and not predicted to improve - I needed a disabled badge for my car! - which I never renewed once it get better before anyone gets the wrong idea...)

    As to anticoagulant levels - are you being careful about your diet? ...especially amounts of green veg? Large doses of warfarin (I was on 8 -12 mg warfarin for years - and I might not even have had APS?!) and difficulty in stabilising is common in APS...

    Good Luck and continue being positive ...getting the diagnosis is one big battle won ...

  • Hello Annie

    You have had a long journey to get to this forum! I am sure that St T will give you the best possible advice and support. So sorry to read you are in a wheelchair and have MS.

    Where are you in the UK?

    I had a stroke on a airplane in 2007 and was mis diagnosed with MS for 9 months then local haemotologist in Taunton suspected APS.

    Hope you get to make new friends and good information on here.

    Kind regards

    Garry

  • Dear annie I was also diagnosed with Ms at Tommies by lumber puncture and MRI I was tested for APS and the tests were negative but they decided to treat me for APS anyway because of my history of thrombosis (not unlike yours) I was very very ill with MS couldn't walk, pee, practically blind , was given steroid drip didn't work then I had every treatment they could offer me including cyclophosthamide (Sorry for rubbish spelling) well the chemotherapy thing if you know what i mean , It didn't work went away with a huge pile of immune suppressing drugs Steroids,azothyoprine still wasn,t getting better , so got impatient stopped seeing the specialists. I joined my local MS branch. threw the drugs in the bin all accept the warfarin However because of all the thrombosis i had in the past I was too scared to ditch the anticoagulents, anyway now for the positive bit ,that was 12 yrs ago I am still a member of my local MS group over the years and I mean years I started to get slowly better and my poor friends at the MS center started to get worse, I am convinced that the reason for my recovery all be it slow is anticoagulent therapy. I am not cured and suffer all sorts of problems but no i am not in a wheelchair and rarely use a sick I don't really have many MS symptoms as time has progressed I think i probably fit the profile more for a person with APS I wonder after all this time what an MRI and lumber puncture would reveal also an APS blood test well I decided to find out I have an appointment at tommies coming up soon ( first time I've been back for 10yrs) will be interesting don't you think ? anyway all my love and best wishes ther is always hope!

  • Hi Mullly, thanks for your reply.

    I have come to realise - in part due to another post on here, that we have Auto Immunity, and that it will present itself as it chooses.I always knew that if you have one auto immune disease you are likely to have another, but I didn't expect something so drastic as APS.

    I really wish I could throw away my pills too. I take 27 a day. yes - 27 every day now. in addition to clexane injections twice a day. It is what it is, I have to realise that, and move on.

    I'm feeling so much stronger emotionally than I have been, yesterday I felt like 'me' again for just a short while, and today has been great. I even got out today for a bit, and did 'normal' things. I had a couple of glasses of wine with lunch - better get my INR checked as I don't really drink at all. but sometimes it's just worth it!

  • A big welcome from me as well. I am so sorry you have had such a trial reaching diagnosis. even if in the end you got to the right hospital. I hope we can be supportive and of interest to you.. and you feel peer supported. Always good to have a new member. Mary F xxx

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