Follow up to Appointment

Greetings everyone. I had an appointment earlier this month with an internal medicine doc whose specialty is hematology. I gave him a run down of what had been happening the last two years including the positive aPL tests in the last year. He said he could not put me on a blood thinner as I have not had a thrombotic event and I stood more chances of bleeding from it than it helping me. He said I have a lot of neurological symptoms and he agrees with the diagnosis of MS by the US doctors. (Remember I am in Canada).

So when I realized that the MS clinic here dismissed me saying to consider APS and this doctor now dismissing me that it is MS and I don't have an MS specialist to follow up with I felt abandoned. So I said to him, "something is wrong with me, I went to the US as it was taking too long to get to see you, the MS clinic won't see me again and you say you cannot do anything. I am not a doctor so I cannot treat myself therefore who is going to treat me?" At this point he said there is a hematologist 4 hours away in Hamilton who specializes in blood clots so he will refer me there and also get me a new neurologist.

I really feel hopeless in getting help. I am on disability and cannot afford to seek help elsewhere. Someone helped me with the US doctors and cannot do anymore. So I do not know what my diagnosis is. Is it APS, is it MS or do I have both? I have since gotten an appointment for the MS clinic 2 hours away. I am thinking that the doctor contacted them. I have not received an appointment for the other hematologist. I will call to see how that is going on.

I wanted to write before but have been feeling a bit down and confused. Thanks for reading.

Dee

25 Replies

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  • Hi, I am sorry to hear that things are going like this, let's hold out hope for the new doctor and while you wait perhaps you and us/I can collate some relevant papers together for the new doctor, and perhaps some books! Several for sale on the HSF charity website.

    Try if you can to write out your history in bullet points to date, prepare for this appointment so it runs smoothly and the way you wish it to.

    Ps Did I give you this before? Bottom left name, I would suggest ringing them: apsaction.org/ MaryF

  • Thanks for responding Mary. I appreciate the links and tips. You had given me the link before but the doctor on it is in the French part of Canada and I do not speak French. I won't give up though. I will regroup and start again.

  • Look I suggest you find somebody who does speak French to help you, or write to him using google translate: I would have a go at that first, he may know of someone else in the country who could help you. Just and idea. It is not good in all languages, but works OK, with French and Spanish, enough to be understood.

    eg

    'Google Translate' does not work too badly with English to French, I use it with many of my friends who reside in France, and I am understood. I also understand them very well using it to translate back to English! Just one email to him might help you. Do explain that you are using an on line free translation service etc.

    «Google Translate» ne fonctionne pas trop mal avec l'anglais au français, je l'utilise avec beaucoup de mes amis qui résident en France, et je suis compris. Je les comprends aussi très bien l'utiliser pour traduire à l'anglais! Juste un mail pour lui pourrait vous aider. Ne expliquez que vous utilisez un service de traduction gratuit en ligne etc

    MaryF

  • Oh thank you so much Mary. This is a very good idea. I will get on it right away.

  • Good, and I notice In Spain came up with some ideas also. MaryF

  • Hi again,

    I feel so sorry for you as I can understand you feel down and comfused. Who would not be? .....

    You have got all the good advises from our best wellinformed here at the site but how to help you to find an APS-doctor in Canada.

    You need a "fresh" vision from an APS-doctor. Get copies from your doctors and copies of bloodworks.

    You need to have a heparin-trial to notice that you get better when you are enough anticoagulated. To continue perhaps with warfarin. By the way, have you read "Sticky Blood Explained" by Kay Thackray?

    I do not know how to help you. I do wish I could. Please do not give up. I know that you can feel much better anticoagulated.

    I guess you have chequed at" apsaction.org." If someone from Canada at this site could help you.

    Plese let us hear how you get on!

    Best wishes from Kerstin in Stockholm

  • MaryF has some good ideas to help you!

    Kerstin

  • Hi Kerstin, thanks for caring. You are helping more than you think. I already have copies of all my blood work etc in a folder and MRIs on CDs. I hope I get that appointment soon.

  • I hope too. Kerstin

  • Hello Dee

    I totally agree with the advice that my two colleagues have given you. Good luck and let us know how you get on.

    Dave

  • Thanks Dave.

  • Hi Dee.

    So sorry to hear that you still haven't had your diagnosis resolved once and for all. I found this American site which may be of some help to you. apsfa.org/aps.htm When you enter there is a menu in red on the left, go down until it says "Find a Doctor" you will then see that this link leads to a list of Canadian Specialists recommended by other patients with APS. I do hope that this site may be of some use to you.

    Sending a hug from here InSpain xxx

  • Hi InSpain,

    How wonderful to have friends in all parts of the World who can help when needed.

    Hugs to you from Kerstin

  • Thank you Kerstin!

  • InSpain thank you. I have looked at the list and they are US doctors. The good thing is if I can come up with some money I live right at the border with a US city and so in 10 minutes I can drive across. I see quite a few within 30 mins to an hour from me.

  • Dee I don't think you looked in the right place and I didn't give very clear instructions! Where it says "Find a Doctor" click and then go down below the map and you will see a link which says "For a list of Doctors outside of the USA, please see our Downloads page." If you click on this you will find a list of Doctor's in Canada. Hope this helps! xxx

  • Ok thanks InSpain. I will check again.

    PS: I found 2 in my province. One is in Hamilton where he says he is sending me to so I wonder if it's that doctor. I called today and they said they did not get an appointment for me as yet.

  • Hi Dee,

    I'm so sorry you are going through this. It is very frustrating going from doctor to doctor and them all ultimately saying "yes there is something wrong with you, but it's not what I specialize in so you'll need to find another doctor who can diagnose it."

    I left my M.S. doctor's office last year in tears. I was extremely fatigued, having foot drop, severe migraines, and bladder issues and she was telling me to see a general neurologist (rather than an MS neurologist). However, it was a general neurologist who had previously told me it was M.S. It is very exhausting, but in the end it is worth getting the right diagnosis.

    In the moments when I get frustrated and want to give up, I try to remember that I'll wake up tomorrow (or the next day) and be ready to tackle it again (tackle finding the right diagnosis and the right doctor). My search has been going on for a few decades. Therefore, you don't need to tackle it today. Take a rest from the fight and when the mind is back in "I can do this mode" - go for it.

    I see nothing wrong with taking a pause for a moment or a week.

    At the end of my last pause I found this wonderful site for the Hughes Syndrome Forum and now I'm getting together a three ring binder of test results and studies that fit why I should be diagnosed as having Hughes Syndrome (with quick little tabs so I can jump to them quickly) and be given anticoagulants. If the doctor disagrees, it won't be because I didn't do my best. :-)

    Since you have had the positive aPL, there are studies on that you might want to pull that indicate you don't have to wait for a thrombotic event in order to be placed on blood thinners to feel better. If you can, I would concentrate on collecting those studies along with your test results. For U.S. doctors, you are better off calling it antiphospholipid syndrome. For some, it's the only name they know. For other doctors, it's an ego issue. Ego not being a good thing.

    Here are a few studies I would have on hand in your three ring binder and I suggest highlighting the most pertinent information:

    In this study, they state that people are often misdiagnosed with MS when they actually have antiphospholipid syndrome. From the study abstract: "it is clear that other neurological symptoms, including diplopia, memory loss, ataxia, and “multiple sclerosis-like” features are common. A notable feature of Hughes’ syndrome is the clinical response to anticoagulants; features such as headache and memory loss often improving dramatically with appropriate warfarin dosage."

    Link to study: pmj.bmj.com/content/79/928/...

    I believe it is the above thinking that leads some doctors to say lets try some anticoagulants and see if they help.

    Have you had the blood test for Prothrombin Fragment 1+2. This might be a test you want to ask your doctor for. There are two forms of the test here in the U.S. They give different numbers, but a high on either one means the same thing.

    In this study, blood tests on study participants showed that the higher the prothrombin fragment 1 + 2, the more severe the symptoms of APS. They also showed that by providing low dose aspirin to some study participants that their prothrombin fragment 1+2 dropped lower and their symptoms improved. For others, it took low dose aspirin plus warafin to have their prothrombin fragment 1+2 drop and their symptoms also improved.

    Link: bmhlibrary.info/9733155.pdf

    In this study, elevated levels of prothrombin fragment 1 + 2 indicate high risk of thrombosis. "When cutoff values of more than 300 pmol/L for F1 + 2 were used for the diagnosis, more than 50% of the patients were thus found to have thrombosis. .... F1 + 2 is one of the most useful parameters for the diagnosis of thrombosis." My values are always above 300. Link: ncbi.nlm.nih.gov/pubmed/181...

    Then I would also gather some of the articles and studies on seronegative APS. While you don't fit seronegative in that you have had positive aPL tests, the idea that we all don't fit every piece and still can have it (with the chance of dying from a blood clot - so better to be safe). Here are a few seronegative articles:

    hindawi.com/journals/jir/20...

    apsfa.org/docs/APSFAVol2Sum...

    Clearly your symptoms are showing that while maybe you have not had a blood clot in the form of a DVT, your symptoms could be the result of tiny blood clots associated with Hughes Syndrome. Your aPL positives show that you very well might be APS. Therefore doctors making you wait for a big DVT or heart attack or stroke while you may be slowly dying from little blood clots in the form of ischemic strokes means doctors need to look at you very seriously and test your for prothrombin factor 1+2 and consider putting you on anticoagulant therapy to see if you respond positively.

    I would also add to my binder some of the studies that show many women dye every year from strokes. And then for good measure I would add some news reports of women who went to the hospital for stroke related symptoms and the hospitals then sent the home and they later had a major stroke.

    For me it's about making the best case I can for being put on anticoagulant therapy. If it doesn't work, so be it. But it will be another stone that I have turned over.

    Of course, I am not a doctor. Just another woman who is being shifted between doctors who say "yes, there is something major wrong with you -- but I can't help you."

    All the best to you Dee!

    Janet

  • Amazing - how much you act for the benefit of yourself and for others! If you can not have what you need - an anticoagulating drug that will suit you - I shall look for a hat ( I have so few) and try to eat it.

    Kerstin

  • Janet, thank you so much for giving me all this information and tips. I am really sorry that you have been struggling so long to get someone to listen to you. Did you test positive and if so for which antibody? Were you given DMDs for the MS? Why do you think you fit APS more than MS?

    I ask because from reading your links and others the two conditions are so close. I was shocked to hear the doctor tell me that I have neurological symptoms that do not fit APS. Of course they do fit. He was also stuck on the Cardiolipin test for APS. I had to tell him the other antibodies that they do test for also. Oh I have not done Prothrombin 1+2 and so will ask about it. Thanks again and I wish us both luck in this battle we have to fight for ourselves.

  • I have not tested positive. I see the APS specialist in NYC in a little over a week and we will be thoroughly discussing the possibility of a seronegative APS diagnosis.

    I do not take any meds (other than low dose aspirin). The effectiveness of MS meds has been questioned. I have always felt in my heart that since I feel so fatigued much of the time anyway, that to add to the mix something that has a strong side-effect of making one feel like one has the flu would be going in the wrong direction. In addition, I know I am much better when I eat only fruits and vegetables.

    There is a book called "Overcoming Multiple Sclerosis" by Doctor Jelinek. He himself has MS and his mother died of MS. He believes MS is a lipid disease and has the science to back-up his theory. (I love reading scientific research papers and he provides a lot). When I followed his diet (without his recommended fish - I don't eat things with eyes :-)), I felt much better. I don't advocate being vegetarian or vegan for others. I just know that my body really responds positively to it. Everyone must find what works for them.

    I am at my best when on a vegan diet with almost zero saturated fat. But it's very hard to keep it going. Many of my symptoms significantly improve when just eating fruits and vegetables. The problem is that if I cheat, then there is a cascading effect. And then I go from being a good vegan with almost zero saturated fat to a healthy vegetarian with more symptoms to a not so healthy eating vegetarian with even more symptoms. This is where I am at now.

    I'm close to making the leap back to being a healthy eating vegan with almost zero saturated fat again, but I haven't yet made the leap. I have to psych myself up and find the right support group. With everyone around eating the Standard American Diet (SAD), it's hard to eat healthy. My husband and kids don't eat many vegetables, so it's more work. Yet, I know it's very worthwhile.

    Dr. Jelinek also advocates exercise (and most doctors do too). This is another area where people must find what works for them. I know my body really responds positively to exercise and if I miss a morning three mile walk, my legs feel sluggish by the afternoon (as if one morning of skipped walks triggers the sticky blood to get stickier).

  • I Think you are right there with the skipped walks. Especially as you are not on any anticougulanting drug yet. You feel well when you exercise. All of us do I Think.

    Do you have a MS dx? But you only take low-dose Aspirin?

    Good luck on your appointment next week.! List your symptoms to the doctor.Have you found an APS-doctor now?

    Fingers crossed for you next week!

    Kerstin in Stockholm

  • Thanks for taking the time to be so detailed. I really appreciate it. I am hoping with you that your upcoming appointment will go well and this doctor will be open to dealing with SNAPS. You have really been up against a lot for a long time and are very diligent.

    Interestingly I have for a time now wanted to stop eating meat. I just found I did not have the appetite for it and had been eating more fish. I still eat meat and hope I can stop soon. It is good that you found a lifestyle that is helping you.

    Like you I have been told that I have MS and then probable MS. I am also not keen on taking any meds for it. The only convincing diagnosis I had was from the neuro in the US (Florida) and he thinks it is PPMS and meds do not help that type. I DO NOT know what I have as it fits MS and it fits APS although I have not had any know thrombotic incident. I also read that one can test positive but not have the syndrome. I NEED to know what it is that is ailing me. Since I was hospitalized in 2012 when I woke up and was numb from waist down the soles of my feet have not returned to normal. Whatever it is it has caused permanent damage to that part of my CNS. I have lesions in the brain and one on the Tpsine and one on the Cspine along with hemangiomas. I seem to be up against a brick wall as I am being dismissed by both set of specialists here in Canada. It won't be for a lack of trying if I don't get a diagnosis here.

    For now I take 3 x 81mg aspirins. I used to take 325mg. The last test showed my aPL IgG as 35.My LA and Betaglycoprotein was normal. My biggest concern is that I live alone and would not like anything to happen and I have no one to get me help.

    I wish you all the best at your appt and look forward to hearing how it goes.

    Dee

  • No MS dx. Just confusion. Over the years general neurologist said yes have it, others said probable, and the best MS specialist says "no probably not, but time will tell".

    I have found an APS doctor in New York City. The problem is that I am not sure he is a seronegative supporter. I'll go in with my info, listen attentively, and let you know how it goes. I recognize that there are several people on this board in the region who are looking for a doctor who believes in seronegative APS. I hope for all of us that this doctor is our answer to resolving our health issues.

  • If he is an APS-doctor he understands APS and listens to symptoms. Good lluck!

    Kerstin

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