MS or APS or both

Hi to everyone. I am new here and is concerned about APS. In 2012 I became numb from waist down. I had unsteady gait and burning pain plus other symptoms. Hospitalised I had brain and spine MRIs which showed lesions in brain, Tspine and Cspine. I also tested positive for Obands in the CSF. They queried MS. Another neurologist also said MS

Went to MS clinic 4 months later 2 hrs away and did a lot of tests. They did not see me again until 9 months later and said it was MS. All tests were negative but they mishandled the sample for APS so it was not done. I redid the test that day. I was seen 12 weeks later and told I tested positive for aCL and so they then said it could be APS and they would not see me again and I should see a hematologist. It would take me 3 months to see one here in Canada so I went to the US as I was going to spend the winter there and saw a hematologist. He said even with the positive aPL there was something else and so he sent me to a neurologist who looked through all the medical records I took with me, examined me and said it was MS but the positive aPL test made it complicated. He sent me for a spinal MRI. I had also done a ton of blood work for the hema.

Results came back and aPL still positive but hema said he could not diagnose me with APS syndrome as it also takes a thrombotic incident along with the positive tests to do so and I have never had one. MRI result came back and lesions were seen in T and C spine. Both docs conferred and I was diagnosed with MS. I had started taking 325mg aspirin from the first positive test. I did not feel any better but is getting worst with pain, difficulty walking and now having bowel accidents. I had started off with difficulty urinating and that continues.

Back in Canada I cannot find an MS specialist (as there are none in my city) and I am wondering if it's APS although it feels like MS to me but from reading, the symptoms of both are similar so I am very concerned. Can anyone give me some advice on my condition? Thanks for reading this lengthy post and I look forward to your help.

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  • Based on what Dr Hughes has written about this, eg in his book. Understanding Hughes Syndrome|: case studies for patients if it were me, I would try to get a trial of LMW heparin and if the hematologist wouldn't order it, I would go see Dr Hughes in London. I did go see him from the US and it was well worth the cost as it allowed me to get the proper diagnosis and the proper treatment which literally has given me my life back.

  • I absolutely concur. I was just about to write the same thing. A trial of LMW Heparin would at least give you the opportunity to see if symptoms improve! Neurologists are not always the best specialty with APS.

  • Oh and forgot to mention that the criteria for dx on APS does say one clotting incident however thats a research criteria, its up to the Doctor to use his head and look at the patients symptoms, tests and clinical history. DX without a clotting incident is therefore appropriate.

  • Thanks APsnotFab. I have children ages ago but all pregnancies normal. One miscarriage 33 years ago so that is not considered. I think doctors don't know much about the illness here in the Western world.

  • Your miscarriage should be considered, its part of your medical history. When I saw prof Hughes he said start at the beginning. I said how far back and he said as far back as you can remember! I had 3 miscarriages and two healthy children 40 years ago but they are all taken into account. Its part of your clinical history so don't dismiss anything. Unfortunately its up to you to become knowledgable and your own advocate so you can talk at the same level to these Doctors. Approach it as a "learn together" exercise. However in doing this you still need someone to lead you and thats when what salty suggests can be worth every penny as it can stand you in good stead for years to come.

  • The hema I saw said that was too long ago. It was also brought on by a physical trauma...a blow. But if that far back is considered then it counts. Yes it is a learning process for me.

  • APS--did the twice daily LMW heparin work better for you? I meant to write you back then (but think I forgot) that the dosing for lovenox is not simply split in half when taking twice daily. Eg the once daily dose is 1.5 mg/kg daily and the twice daily dose is 1mg/kg BID

  • I actually have not tried it long term yet. I asked PH about doing it and he said it would be interesting to try splitting the dose of one injection. I feel a bit nervous about doing it as I cant judge how much Im getting when trying to halve the dose. I tried it a couple of times and it seemed too easy to get too much too quickly and then I felt I wasn't getting enough second time around. I suppose it doesn't really matter because you just end up getting the same amount in 24 hours but Im sure it does not really work like that. The 10,000iu 0.4ml injection of fragmin would probably be better at 12,000iu if I am going to split don't you think?

  • Yes, I agree. I don't think it matters too much if you are getting the exact amount every 12 hours. You know you will get the full dose every 24 hours. Going with the 12,000 units sounds like a good plan and based on the lovenox dosing which I noted above, you might even need to go up on the dose to around 15,000 units. Please let me know how it goes if you do try this.

  • I will.

  • Thank you Salty. I am glad you were able to go and get the correct diagnosis. I would go if I could afford it but I can't. On the Hughes syndrome website it said if the person only test positive for the antibody but no thrombotic incident then 75mg of aspirin should be taken. I have been taking 325mg for 6 months and only lowered it to 150 in the last 2 weeks. I have an appointment with an internal medicine doctor June 5th so I will ask him about other blood thinners. Thanks again.

  • Preserved, that is true in general, but there are many non-thrombotic manifestations of the syndrome that respond to anti platelet agents and/or anticoagulants. If you read the book I mentioned, you will learn that the way in which that was discovered is when some of the patients with these various non clotting manifestations DID have a clotting event, their non clotting manifestations improved or completely resolved. I have never had a clotting event yet take LMW heparin and plavix (another anti-platelet agent as aspirin did nothing for me). A cardiologist once told me I should wait to have a stroke before taking those medications (my brother had a massive stroke at age 44). In my opinion, that is terrible advice, especially when the proper combo has caused a complete resolution of my severe migraines, trouble thinking, word finding difficulty and stress fractures. Dr Hughes described over ten years ago, the heparin therapeutic trial. It is just that, a TRIAL. If it helps your symptoms, you stick with it. If it doesn't, you obviously don't. I hope you can find an MD who will give you a trial of heparin.

  • Salty, I totally agree with you. I was just repeating what is on the Hughes website. Who wants to wait until they have a stroke to be treated? No one for sure. I have had migraines since I was a child and since all this I have great difficulty finding the right words to use. I am praying this doctor will listen to me and prescribe something as trial. I realize I have to be my own advocate in all this.

  • Yes, unfortunately you do. I think it is very important to pitch it as a TRIAL. If you send me your email I will send you a one page editorial about this by Dr Hughes

  • Well said!!

    Kerstin

  • PH said only at this years Patient Day that 75, 80 or up to 150mg of Aspirin depending on the make are all about the same and enough to do the anticoagulation that is needed. Of course for some they may need another anti platelet like Clopidogrel. Any Doctor who says you have to have a stroke before you are given anticoagulation medications should be struck off in my eyes or made to pay the medical bills and compensation to the patient! Only people like me who have had strokes quite unnecessarily because of misdiagnosis and Doctors incompetence can say that with some knowledge. We have to live with the damage caused everyday.

  • Before I was diagnosed with APS I was having a lot of neurological symptoms that mimic MS. I started with sharp pain running down my arms, numbness in my face, dizziness, double vision, vertigo, and then I eventually would lose half of my vision in my right eye. I was sure it was MS and my brain MRI did show a few abnormalities but my neurologist never used the word "lesions". Eventually he did blood tests and my clotting factors were through the roof. I have never had a for sure diagnosed clot but my son was born early from complications which in turn lets me be diagnosed with APS. I would try some blood thinners or plaquenil and see if your symptoms get better. After 3 months on Coumadin and plaquenil, almost all of my symptoms have gotten better. If those don't work then definitely lean more towards thee MS diagnosis. Good luck !

  • Thanks Nicole. After reading symptoms of APS on the Hughes syndrome website I realized it is not so cut and dry to say MS. Only the cardiolipin was positive for me and in the low to medium positive range The other clotting tests were normal. In fact my antithrombin III activity was high and the explanation on results said if it was low/deficient then it would be linked to thrombotic risk.I hope the doc I see next week will try me on a blood thinner. I am willing to take the risk to see if it makes the symptoms go away.

    On the other hand how is living with APS. Honestly I am scared as all I see are strokes, heart attacks and PEs. I have PTSD so it makes it harder for me. I also have no one to talk to about any of this.

  • Hi,You have some positive results for Hughes Syndrome/APS which is a starting point, however there are a few people who have both MS and Hughes Syndrome/APS. I enclose a link for you as there is a specialist in Canada who maybe would be a good starting point. I also feel that if you had a trial of anticoagulants it would give you a clearer picture plus of course some people are also given Plaquenil alongside anticoagulants.

    apsaction.org/

    MaryF

  • Thanks Mary F. I will ask the doc I am seeing this week to try me on some anticoagulant. I don't know what Plaquenil is but I will look it up. Thanks for the link.

  • Mary I found one doctor in Canada but he is in Quebec and everything is in French and I don't speak French. I will call and see if they use interpreters or if there is any other here.

  • Yes, use that contact as a reference point, as they may be able to point you in another direction nearer as they will know if there is anybody you could see. MaryF

  • Hi, I can only agree with Salty and Marys advice.

    I would like to mention that before I started warfarin I had exactly the symptoms you describe above. Even could not see on half of my right eye for some minutes on several occasions. I have APS and all the antibodies in high titres. These symptoms were gone after warfarin was started.

    God luck to find a good doctor!

    Best wishes from Kerstin in Stockholm

  • Lure2, thank you. It is good to have someone I can talk to and get advice about this. Only my cardiolipin was in the low to medium range but the beta and the other one was ok. How hard is it to live with APS?

    Thanks for the good wishes; I need them. :)

  • I am 70. I had had this illness perhaps 15-20 years. My symtoms got worse till I was well enough anticoagulated. Two things are important; to get a diagnose and to find an APS-doctor.

    It is not hard to live with APS. I am so lucky that I read "Sticky Blood Explained" by Kay Thackray. There on page 55 I understood that I had APS and I did what the doctors had advised me. That was to start Warfarin.

    It is more difficult to have all the symptoms but quite OK to live with this illness.

    Keep well anticoagulated and find your APS-doctor. Prof Graham Hughes is the best there is!

    If you can get to him you are lucky. Take care

    Kerstin in Stockholm

  • Thanks again Lure. This makes me feel so much better.

  • You are most welcome. We are here to help eachother.

    Kerstin

  • I agree with what has been said too.

    I owe my life to going to see Prof Hughes.

    Best wishes.

    Dave

  • Thanks for your response Dave. I wish I could come to see him but financially can't. I will try to get the anticoagulant as the others have suggested.

  • Hi. Please do.

    A two month trial of Low Molecular Weight Heparin, at the right therapeutic dose for your body weight, would tell you whether your symptoms resolve on good anticoagulation.

    Good luck and really push for this.

    Dave

  • I definitely will push for it Dave. I see an internal medicine doctor June 5th and will tell him I would like to try it.

  • Good luck! I agree with above; if you go on a good blood thinner and your symptoms improve -- then there's your diagnosis (just like the TV show "House.")

    How hard is it to live with APS? Well . . . it depends. I went for over 10 years completely symptom free after the warfarin banished the migraines and mini strokes. I did have numerous brain liesions (which looked like spider webs on my MRIs) -- they cleared up within 2 years on warfarin. Then, my arthritic hip worsened. I kept charts and found that when my INR was higher, the hip felt better. But I never really convinced any doctors that this connection was valid and the hip continued to deteriorate until I finally had it replaced this past November.

    The surgery was uncomplicated and I "bridged" from oral to injected thinners without incident. My hip is fine now.

    I have been anemic since age 4 and warfarin did nothing for the anemia. But I accidentally discovered I have gluten sensitivity/celiac(?) when I went gluten free diet. All my scary blood numbers went from very high (rheumatoid factors) or very low (RBC #s) to (what one hematologist called) "boringly normal" within 8 weeks of going gluten free.

    So my life with APS has been very good. I still hike. I still bike. I did give up learning to ski, off road/trail mountain biking and white water rafting as doing those activities while on blood thinners just seemed . . . well . . . in my case . . . Stupid! But other then that my life has been normal. I take my warfarin in the morning, I automatically stick to the same amount of Vitamin K containing foods, and blood thinning foods per day. I get my blood drawn for an INR twice a month.

    Except . . . . now the new (to me) Duke hematologist says that I don't have APS at all (despite the previous high ACL #s.) He says my clotting proclivities were due to my bone marrow trying to crank out as many blood particles as possible to make up for the anemia. I don't think he's right. But then, he's the hematologist at Duke University, and I'm the English major suburban housewife from West Virginia. I have agreed to take less warfarin to a lower target INR to see if any scary symptoms return. We'll see.

    So, maybe you can take comfort from my story that life with APS can be mostly normal. Or not. Since maybe I shouldn't even be on this forum since maybe I don't have APS.

    Again, good luck! And keep us informed.

    (And if you ever come to West Virginia to bike, hike or ski I can recommend restaurants, trails and outfitters.)

  • Thank you Gina for sharing all this with me. It's really interesting and informative information. I am happy that all has been resolved for you.

    If I happen to come that way I will definitely make you know. :)

  • Hi Gina,

    Of course you shall be here! Are you sure you are doing the right thing when you lower your therapeutic range??

    Take care. We need you.

    Kerstin in Stockholm

  • Hello Preserved. I have been spinning on a very similar hamster wheel to you for what seems like forever. I am so sorry for your distress. I want to let you know that I understand. I am mostly wheelchair bound, have lost most of my sensation in my legs and have electric shock type charges in my arms and hands. I also have some degree of incontinence too, and live with chronic pain on a daily basis.

    In your post you don't mention if you have had a lumbar puncture or not? I pushed really hard to have one last year as I was being pushed from pillar to post as to whether I had MS or APS or neither or both! In the end the lumbar puncture showed definitively that I did not have MS. I also had a test where they put electric currents through your body. This showed that I have damaged nerves in the Central Nervous System. The problems with incontinence are linked to the Autonomous Nervous System. (If you google these to items they will become clearer too you.)

    I have had to jump through so many hoops being accused of psychiatric problems, making it all up and much more awful things. So what about all these symptoms I hear you ask? Well after an MRI it showed that I had lesions on the brain, but they were attributed to the APS because I have had a stroke. However, what appeared to be two hemangiomas sitting on my spine have turned out to be evidence of two spinal stokes. Where the tissues are damaged it appears to be causing pressure which have caused all these physical problems. I now have a Doctor who is very up to date with neurological symptoms connected to APS. At the end of June I have an appointment to see a Neurosurgeon who will evaluate if it is appropriate for me to have surgery or not.

    If you feel unsure about your results, which is self evident that you do, I would recommend that you get a second opinion, it is the only way that you will get peace of mind.

    If I can help you in any other way don't hesitate to send me a private message.

    Wishing you all the best from here InSpain. xxx

    PS: Sorry for the long answer!!!!!

  • InSpain, than you for taking the time to tell me all this. I am really sorry you had to go through all this before getting a diagnosis. I did have a lumbar puncture at the beginning and it did say I tested positive for Obands. They did not take a blood sample for testing at the same time which I understand is the way it should be done for MS.

    Interestingly, there are 2 hemangiomas seen on my thoracic spine. They regarded them as benign. I will be seeing an internal medicine doctor on June 5th so I will talk to him about all this. Yes I do wonder if I am properly diagnosed as the symptoms and lesions of both are similar. One of the things I have read though is that in APS the CSF would not have Obands.

    Thanks so much for the best wishes and I wish you a safe and favourable outcome in your decision to have surgery or not.

  • Thank you for your kind thoughts. My hemangiomas/site of strokes are in the lumbar and sacral parts of the spine. I forgot to say I also have a large occulsion to cervical 6-7 which may also need surgery, which my Doctor tells me can cause problems in the lower half of the body too.

    I too had read that in APS the CSF would not have Obands. However, as APsnotFab so quite rightly pointed out any Doctor with sufficient knowledge of APS would use their common sense in a case like yours.

    Interestingly, you might like to know that I was originally diagnosed in the late 1980's with secondary APS by Professor Hughes and Professor D'Cruz in London. So please don't be put off in your search for the truth and an appropriate treatment plan. So many people on this site will be able to relate to what you're going through. Sadly, most of us have had to research our own illnesses and become our own advocates.

    Do let me know how you get on with your appointment. If they suggest surgery you definately need to ask to see a Neurosurgeon without a doubt. My appointment is on the 30th of June so I'll keep you posted on any new developments! xxx

  • I shall literally be tying myself in a knot with everything crossed until it is all over! MaryFx

  • Ha ha!!! Me too!!! xxx

  • You have already received some great advice, but it is very important to receive the correct treatment early to avoid as many problems that can occur. You have children, for their sake you need to stay healthy. I know you said you can't afford to go to London to see Prof. Hughes but you really can't afford not to either. I was 1st diagnosed in '94. I was treated w/heparin during my pregnancy. Afterwards I just took aspirin. I moved & my new dr. Repeated the tests. All have been negative since. I have had doctors here in the USA stumped on my dx for years. My symptoms did not match MS but the weakness in my rt. leg did. So because they wanted to get rid of me they dx me w/MS. I had the spinal tap, it was not conclusive. When they made me very ill from high doses of cortisone, I had it. I looked for a great airfare and went to see Prof Khastsma. He said I was seronegative APS. I had a overwhelming history of miscarriages, PE, small babies, bowel obstruction, etc.... He it was a shame they didn't treat me for APS. I am in a wheelchair because I had 2 back surgeries which had complications because of APS. I have been on Cleaner for 14 months now. Walking is getting easier but I wished I was treated earlier so my & my families life wouldn't have been turned upside down. I had to have my diagnosis from London for the DR here in the USA WOULD treat me. Unfortunately they are not doing a good job because they are not knowledgeable enough. Designer16

  • On behalf of us all i want to thank you for your informative story from your experiance to be dx with MS and too late with APS. I am so sorry that the doctors in the US could not treat you for APS in time. This is a true and great story and very kind of you to tell us all.

    Best wishes to you from Kerstin in Stockholm

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