Is it APS or MS or both?

HELP! I wander if any of you have had a similar experience.

I was diagnosed with MS a year ago following an episode of tingling/numbness in left hand/arm.I had an MRI of my brain and cord and had 7 lesions. I'm not on any treatment at the moment but feel tired, weak, have visual disturbance, buzzing down legs and regular migraine with zigzag vision and flashes for approx 20 mins prior to the headache starting. I regularly research new medical information and found an article on the MS resource Centre website stating that Hughes syndrome can mimic MS.

I suffered 2 miscarriages in 1996 and was diagnosed with APS and was told that this condition would only affect me in pregnancy. I became pregnant in 2004 and was treated with aspirin and heparin which I took throughout pregnancy and for 8 weeks after the birth of my daughter. I visited my GP today asking to be referred to St Thomas' for a rheumatology assessment based on this uncertainty of diagnosis and for further management. My GP checked correspondence from my neuro Dr. and anticardiolipin antibodies were negative when checked a year ago! My G.P. is now reluctant to refer me on this basis but I really feel that my symtoms may be due to APS which can be treated and not MS!

20 Replies

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  • Are you tellng me that unless your GP will refer you, you can't see another doctor?

  • Hi, GP wanted a week to get more info. before he would make a referral, ie, old notes. He's not convinced my tests were positive for APS in 96 when they are negative now!

    Seeing him tomorrow morning. Will be armed with loads of info. and going nowhere until I get my referral to Prof. D'Cruz at St Thoms!

  • There are many people including myself on here whose story is very similar to yours. seronegative APS is difficult but it is no reason for a GP not to refer and you are entitled to a second opinion.

    My advice would be to push hard for that referral and perhaps take some of the information on the HSF website about MS and Hughes Syndrome with you to your GP. 1 in 5 I believe is the stat for patients Prof Hughes sees that are misdiagnosed. Perhaps ask your GP if she is prepared to take the consequences for a misdiagnosis!

    If you can possibly rummage up the funds you could think about going to London Bridge directly taking your tests etc with you.

    Please keep us informed of your progress.

  • Success!

    GP has agreed to the referral to ST Thomas's.

    I'm seeing Prof D'Cruz.

    Anybody any idea what the waiting time for appointments is?

  • Cant speak for Prof D'Cruz, who is excellent BTW, but usually it seems to be around 5-6 weeks to St T generally.

    Well Done that must be a weight off your mind :-)

    Let us know how you get on.

  • I have almost the exact same symptoms as you and was sure I had MS until I was diagnosed with APS. My symptoms went away when I started taking my meds (aspirin, plaquenil). Are you still having the symptoms?

  • Hi

    Put myself on 75mg aspirin about 10 days ago, no change in symptoms yet.

  • Hi Nicole

    Did you have a diagnosis of MS?

  • I go to London where I have been tested positive for the LA after weakly positive tests in my hometown. I have suffered from several small strokes and a larger CVA. Now here's the thing, reviewa of my brain scan have shown as well as the vascular events, some inflammatory lesions as well? Question MS aswell. Has anyone been diagnosed with MS and APS, is it possible to have both?

  • HI , I have been diagnosed with M.S. for 18 years I am on so much medication, for my m.s. recently had major back surgery and unlucky me developed D.V.T, which was a shock , so ended up having lots of blood tests, to try to find the cause, blood test showed protien s, and now shocked have tested positive 3 times for APS, so tomorow I meet with the Hemotologist to find out, what is best for me next, I would love someone with plain language to let me know what is the best course of action as I want to get on with life, I have booked my trip to go diving at chrismas, we have one life, so I will scream and shout until, I get the help I need, at the moment really not well, sorry to rant but why do we all have to fight so hard, for the right treatment, it should not be like this, sorry everyone

    Angela

  • Hi

    thanks for the reply.

    I think you can get lesions with APS that look like MS that can fool the best of neurologists!

  • Hi Mitzy

    I agree with what others have said. Push for a referral either to St. Thomas's or to see Prof Hughes or one of his team (privately) at the London Lupus Centre at London Bridge Hospital.

    Good luck & best wishes.

    Dave

  • Hi, here's my story of having MS, and recently being diagnosed with APS. at London Bridge.

    I've copied it in from a post I placed as my own question, but it may help answer some of your questions.

    "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."

  • Hi,

    I am having a similar situation. The brain MRI is showing a sign of denyelination and I am seropositive for all the antiphospholipid antibodies.

    After that two tests showed antibodies, I receive aspirin.

    Lately the situation worsen, I have more fatigue, more headaches, tingling/numbness in my left arm (especially the small finger), and for one day I a speech problem. These are been checked at the moment and I will meet with the neurologist next week. The hematologist is waiting for the neurologist's diagnosis to decide if to put me on Warfarin.

  • Hi David 1970,

    I am glad you have found this site. We all have APS here. I can hear that the doctors are waiting to give you perhaps more than aspirin.

    We are not Medical trained here but it sounds as if you need more that Aspirin. Those symptoms sounds familiar.

    I Think you should look for an APS-doctor. A specialist. Where are you from? Who diagnosed you? If you tell us that it is easier for us to help you.

    Look at hughes-syndrome.org/ selfhelp/signs and symptoms etc etc.

    Please let us hear again from you.

    Best wishes from Kerstin in Stockholm

  • My hematologist is asking the neurologist if the problem is ischemic. If it is she wants me to stop aspirin and start Warfarin/Coumadin.

  • I forgot to thank you for your answer. Most the symptoms I have could be both MS and APLA. The only thing that cannot be MS related is a low platelets count.

  • I forgot to thank you for your answer. Most the symptoms I have could be both MS and APLA. The only thing that cannot be MS related is a low platelets count.

  • Hi again,

    Did you get the antibodies for APS?. I do not know what seropositive is. Who gave you the diagnose?

    If you have got the antibodies and they are not sure of MS it ought to be APS. My neighbour has MS and I have asked her several times if they are sure. She says they are quite sure. As I have told you I am not Medical trained but I know this illness pretty well though.

    I absolutely think you shall see an APS-doctor in your case before they decide something without knowing APS or be remitted to one on our list here. You are from England are you? You did not answer who diagnosed you. It is a big decision to start warfarin and especially if you do not even need it. There are other drugs also. Lupus, Sjögren, Thyroid often go hand in hand with APS. We know that.

    We know how very few doctors that are wellknown with APS.

    Take the copies of you blooddraws with you when you see your APS-doctor (the specialist)

    Good luck. Please tell us how it goes.

    Kerstin

  • Hi again, Did you see what Manofmendip (Administrator) suggested 2 years ago. I know it takes over 1/2 a year to see the Professor but if you get a good referal from your doctor to the others there perhaps. I am from Sweden so this is not my area so to say.

    Kerstin

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