Hi, Apologies for the long post that follows, but... - LUPUS UK


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Hi, Apologies for the long post that follows, but I really need advice and support at the moment...

anniesensi profile image

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.

21 Replies

Annie, I'm so sorry. My heart goes out to you <3 What a dreadful time you've had! Did you mean to post this in the Lupus UK forum though? I know virtually noting about MS so can't help but hope things improve for you soon. xxx

Snm24771 profile image
Snm24771 in reply to Tigerlily4

Just read your post and you touched my heart! It breaks my heart that it's always the lovely ppl that suffer! Try to keep your chin up honey I'm here if you ever need a chat

Lots of hugs Sam xxxxxx

Hi, I did, because I am in the frame for Lupus, having been diagnosed with APS as a secondary Auto Immune Disease. I've been having excruciating pain in my back - I probably should have posted in APS really, but thank you so much anyway.x

Hi, thank you so much.x

hi i am so sorry to hear everythin u have been through i have lupus with scleroderma overlap n vasculitus with scleroderma real involvement i had a clot in my finger n had it amputated n had lots of scares re clots my husband has ms n has recently jst been in with a clot that travelled 2 both lungs gave us a fright so my heart go,s out 2 u. i would say it is prob all from the aps as that has clot risk can the people at st thomas not give u all the answers sorry not to b much help but samé as sám here if u need a chat biiig hugs xx

Ahhh, I see Annie. Glad you're being seen at St. Thomas's for the lupus - no better place. Sorry I can't help with your complicated symptoms - which are beyond my expertise and experience - but, like Sam, am here if you need to talk. PM me anytime. I'm virtually housebound so normally around : ) xxx

Hello Annie

Have you spoken to Dr Hunt? She specialises in clotting and lupus, so for my money she must be the person to have on side. Apart from that she is a very good doctor.

i think it might be a bit irrisponsible for anyone here to try to guess what the futre holds.

Good luck.

Thank you, you are right. It's what I need to know but nobody can say...

Dr Hunt came and visited me whilst I was in St Thomas'. She was really helpful, and she is the dr who said that despite neg. blood tests the APS was a certainty. I wish I could remember her better but I was on a lot of morphiene at the time!

I have also booked a consultation with professor hughes on the 27th. I am anxious to see him because I am in a lot of pain!

Thaddeus profile image
Thaddeus in reply to anniesensi

Good luck with Dr. Hughes

I think a lot of us want to know what the future holds regarding the path of our illness, but it is so personal that trying to second guess it is often futile or worse will cause unnecessary worry.

Herb profile image
Herb in reply to Thaddeus

Also let us all remember that the future is uncertain for everyone, traffic accidents happen to healthy people as well as sick people, natural disasters happen, no one can predict the future.

Thaddeus profile image
Thaddeus in reply to Herb

Aint that the truth.

anniesensi profile image
anniesensi in reply to Herb

Hi Herb.

You are so very right. I suppose, what we have, is an insight into our futures, which, on the one hand is scary, on the other hand gives us an opportunity to be as well as possible, and make lifestyle changes accordingly.

Thank you for your very sensible e-mail.


anniesensi profile image
anniesensi in reply to Thaddeus

Hi Thaddeus

You know what - my memory being as it is - especially at the moment, I missed my appointment with Prof. Hughes.

I do have a follow up with Dr Hunt though at the end of this month.


Oh My I am so sorry to hear how ill you are, you have had an awful time lately, My heart goes out to you, As we all know w never know whats round the corner. Glad your seeing a great doctor and professor..Keep us informed how thing are..Regards Fiona x

anniesensi profile image
anniesensi in reply to fj14

Thanks Fiona,

I have found this site really helpful, sound advice from all and somewhere to share experiences and fears..

I hope you are well.


Hi everyone, I thought I'd update you all.

I have just come back from a follow up appointment at St Thomas' with Prof. Hunt. She has confirmed my MS, (it wasn't in doubt, but she confirmed it) she has confirmed APS and she also told me today that I also have SLE! I didn't expect that.

My warfarin is going to be changed to another blood thinner - afraid I can't remember the name... but it's being changed because I've started to loose some hair.

Then when the new drug replacing the warfarin is stable I'm going to have a prescription for pain and fatigue caused by the SLE.

So, there it is. Apparently the SLE doesn't appear to be too aggressive, the APS is aggressive, and I'm going to have a further MRI scan to determine the progression so far of MS. It's hard now to know what is causing what symptom wise.

Thanks for listening...

mstr profile image
mstr in reply to anniesensi

Hi Annie, Hugs to you as you have so much going on. It must be as you say so difficult to know which symptoms belong to which illness. Take care xx

Thanks for the up-date. Oh dear ... none of this is good Annie - once again, I'm sorry you're having such a tough time. Looking on the bright side, at least the SLE has been picked up and will be treated. I hope that will make at least a small positive difference to how you feel day-to-day. Big hugs xxx

hello Annie sorry you arehaving such a bad time, I also have MS and have had several bad relapses and have to learn to walk again, now have been diagnosed with lupus wonder if they are related as both auto-immune problems, the Lupus started with a severely painful attack of rheumatoid arthritus lasting 6 months couldn't do a sausage, steroids helped then blood tests armful after armful later lupus etc were diagnosed, anyone else the same and what now?

healing thought and hugs to all

Annie sorry this is no help to you and apologies for "going on" but only dianosed recently so still learning

myself. hope things get better for you soon xx

hi holly,

they do say that when you have one auto immune disease you are vulnerable to others. I'm learning too.

it's frightening and worrying but at least we do have a place here to discuss our worries and not be judged. It's always helpful knowing people just care!


Guess what? I'm also anaemic! I had to laugh this time... I have "a rare type of anaemia, not often seen" Honestly. I really did laugh.

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