Does anybody else here have Multiple Sclerois AND APS?

Hi,

I have both of the above, recently diagnosed with APS after a series of frightening clots, and, I have discovered recently that I suffered a stroke that was missed because the A&E Dr assumed it was an MS relapse.

So, I take so many meds (27 per day at present) have so many symptoms, but it's hard to know now which is MS and which are APS.

I am desperately hoping to finish my degree - second year begins in October - but I'm not well at all. Please, any words of advice... am I being unrealistic to think I can manage another two years at University?

Thank you

x

15 Replies

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  • I'm so sorry Ann, that you are having such a time of it. I doubt the doctors could separate the symptoms since APS mimicks MS. That is quite a lot of meds. They did that to me after my stroke and the meds themselves gave me diabetes which in itself presented more danger than the things they were giving me the meds for. And the meds had symptoms of their own. I finally reached the point to walk into my MD's office and have her wean me off all meds that are not directly prescribed for pain and comfort and to allow me to communicate. (received severe stutter, among many other things with the last stroke). I actually felt better day by day. That is not to say you should do the same. Just to beware of what so many meds can do.

    As far as going to school. Just do what you can - while you can. There will always be another semester right around the corner and it doesn't matter how LONG it takes to finish. It's the accomplishment of finishing at all that counts. So take your time. Don't be intimidated by the "norm" because you are not "norm". Setting those standards for you is setting yourself up. It's pretty remarkable that you accomplished one year in school while fighting your body at the same time.

    Your goals are very realistic. You'll just have to adjust your time line a bit. Or not. One never really knows till you try.

    Warm wishes and best of luck.

    Canary

  • Thank you, I suppose life is full of twists and turns, and I will try to continue with the same attitude as I have done so far with MS, which has been to not let it define me.

    In fact, as odd as this sounds, MS has taught me so much about my strengths and has also helped me to accept my weaknesses.

    I've been so freaked out by APS though, because I know through my limited experience of having it it can take your way of life, or even your life without notice.

    I just got my reading list sent through for next year - it's full on, and I can't wait to start! My intentions are to pass with distinction. I am studying Photography, perhaps I can use my experience so far to inform my work!

  • Annie, forgive me if you have already found this, but you may profit from thekid's recent blog, " we don't have APS, we have autoimmunity.". He certainlyoints up that the symptoms of Inflamation and autoimmunity overlap and go beyond the boundaries of strict diagnoses.

  • Annie, I was reading your blog and it says you were just diagnosed with lupus, do you have lupus also?

    How did your stroke self heal? Didn't the clot need to be dissolved? I to was misdiagnosed by an E.R doctor ( same as A&E ) here in the states. The E.R doctor gave me a lot oj iv pain medications and did cat scan and sent me home. I was asleep my husband and kids got me home and in bed, only to find me blue and unresponsive the next morning. The ambulance came and got me, and as it turned out I did have a stroke and was on life support for 5 days. They also had to give me high doses of iv heparin to dissolve the clot im my brain..

    Renae

  • Hi Renae,

    I must have written that I had been dx Lupus when I was unsure of the definitions.

    I have SP. Multiple Sclerosis, and so unfortunately, when I had what I now know to have been a stroke I was put in a CT scanner and told "It's ok, it's just your MS" I was pumped full of steroids and sent home.

    I was only diagnosed as having had a stroke because the Dr's at St Thomas' (only 2 weeks ago) were so thorough that they did an MRI of my brain. It showed more MS lesions, and a previous stroke. I've now been dx APS because of the frequency and severity of my clots, and because of the evidence of the stroke.

    Apparently a CT scan at the time a stroke is happening is not sufficient to diagnose. I should have been given treatment for a stroke at that time and then have been followed up. I was in the hospital within 30 minutes of it happening.Perhaps then I wouldn't be in a wheelchair, or perhaps then the APS would have been dx before I ended up critically ill with PE'S in all segments of each lung and a leg that was "just viable" due to an arterial clot.... I digress.

    So, I suppose the stroke self healed to some extent, but not as well as it would have done had I been given IV heparin. Im certainly living with the consequences every day. Maybe the IV steroids had something of a beneficial effect, I don't know.

    I hope that helps?

    Annie

  • Wishing you good fortune at the University. I was diagnosed with MS but my Rheumatologist declared it was not MS but APL.

    Jean

  • Hi Jean

    Its interesting to read this. I have been diagnosed with MS a year ago from lesions seen on MRI. I was diagnosed with APS 12 years ago following recurrent miscarriage but told it would only affect me in pregnancy! Just managed to convince my GP to refer me to St Thomas's. Would be great if it's not MS! Could you please tell me more about your experience?

    Kind regards

  • Hi Jean,

    I don't understand why it is that a Rheumatologist can tell a Neurologist they are wrong, and vice versa!

    How was your MS diagnosed? If you had an MRI scan which shows lesions, either on the brain or spinal cord, or both then there is a high probability that MS is the reason. MS lesions are apparently very distinctive in their appearance. If you have a lumbar puncture that tests positive (usually done after lesions are seen) then there is no question of a diagnosis of MS being certain.

    If, however you have had no MRI scan, or it was clear, and no lumbar puncture, or it was clear, then you can be classed as "probable MS" in which case, clearly there is a guessing game going on and unfortunately many people do live in limbo land for a long time. I can imagine that if this is the case that two different consultants will have their own speciality in mind?

    But, as I have discovered, you can have both. My MS was diagnosed by MRI which showed lesions in brain and spine, so therefore conclusive. Which came first? I don't know, but I think it is likely that the APS is secondary, because I have been blessed with three beautiful daughters. So glad to have been a young mum...

    I hope that's helpful? Be well,

    Annie.

  • I am not totally convinced that an MRI is conclusive in diagnosis. Lesions can be seen in APS that look like MS.

  • I agree, MRI alone gives you a "probable" diagnosis, but it is the presence of myelin in the spinal fluid that is conclusive.

  • I first had an MRI because I had lost my sense of smell. It turns out the loss of smell came from a side effect from my medicine. Anyways they found some white matter damage in my brain. I immediately had a spinal tap. The results came back normal. The neurologist diagnosed me with mild MS. My Rheumatologist immediately called me to tell me that it was NOT MS. Instead he belived it was the antiphospholipid antibody syndrome. He was thinking that my white matter disease happened before I was on the coumadin. Time will tell as I have an MRI every few years to see if the white matter progresses. Hope this information helps.

    Jean

  • Annie, the problem with the doctors using a cat scan to see a stroke is that it can not tell if the stroke os old or new and it can it can take 12 hours to see a new stroke on the ct. Mri is the best way to diagnose a old and or new stroke. Sorry for any typos, I am using my phone to type..

  • Annie, the problem with the doctors using a cat scan to see a stroke is that it can not tell if the stroke os old or new and it can it can take 12 hours to see a new stroke on the ct. Mri is the best way to diagnose a old and or new stroke. Sorry for any typos, I am using my phone to type..

  • Annie, the problem with the doctors using a cat scan to see a stroke is that it can not tell if the stroke os old or new and it can it can take 12 hours to see a new stroke on the ct. Mri is the best way to diagnose a old and or new stroke. Sorry for any typos, I am using my phone to type..

  • No problem at all. Thank you for taking the time to reply.

    Everything is pointing at negligence on the part of the A&E for mis diagnosing and mis treating. Surely I should have been given blood thinners since I presented with classic stroke symptoms, even though the CT scan didn't show it up ? Clearly it couldn't have done. What you have said re scans is the same thing St Thomas' told me.

    I know this sounds like I'm gunning, and if I'm honest, I suppose I am. The Hospital in question has now closed down. I'm going to take legal advice, because they declared me to have not had a stroke within 30 minutes of my arrival and only by giving me a CT scan.

    I feel that I have been harmed by the hospital - they missed my stroke, they assumed that it was an MS relapse. That, surely is so very wrong? My life really has deteriorated because of this. If only they had given me warfarin as a precaution...

    I didn't have an MRI until last week at the wonderful ST Thomas'. The hospital that said no stroke just CT'd me, said I was fine, gave me steroids and I was out the same day with no follow up.

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