How can someone with APS got diagnosed with MS

I was at the clinic today, she is excellent in her field especially APS. I've been on Fragmin x 2 10.000 units for a year. (But put back on waferin after a year as I got lost in the system ) & I told her what has been happening, (hair loss etc). I also told her that on the leaflet about Fragmin, all the do's & don'ts, and what I was experiencing was dangerous etc. But she completely excluded all the facts on the leaflets, said that it was not right, but at the same time she decicided to do all the tests that she said was "not right". (Confusing)?? Also I have a under active thyroid, which causes hair loss but my GP has just upt my thyroxine, bt I'm losing even more than ever.

While waiting in the waiting room, I got chatting to another APS suffer, she was telling me that although she was diagnosed with APS (without having any DVTs nor PE's), they found out that she had MS. She told me that some of the symptoms are quite similar to what I have, also some of the thyroid symptoms are similar, but she still has the APS disorder.

My mum has an autoimmune disease, I can't remember the exact name, The initials that start with "C, and it's auto neurological motor disorder, also she has Lupus, but no APS.

My doctors are baffled with all my elements, but I'm at wits end what is exactly wrong with me. My doctor at the hospital has just rang and told me the my D (something) is very high, (possibly a clot)? What is this D?

26 Replies

  • Hi, you say your Dr is an APS specialist? If not, you need to see one. Warfarin can cause hair loss? Many of us have multi immune problems - the 'admins' can give you details of what tests you should have or direct you to the information you need. The only thing I can think of is the d-dimmer test being high - yes this could be a blood clot, if they rang to tell you - what are they going to do about it? Think you need some answers.... keep asking until you understand. Hope you feel better soon

  • It sounds like a DDimmer which would indicate a clot. What is your INR range? What did the Dr say they were going to do about the high result? I would call them back and ask questions as you might need to be put back on Heparin for awhile.

    Where are you located and are you under one of our recommended APS specialists in the UK?

  • Yes, she's one of the best Dr Hannah Cohen at UCH. (she's great) I had seen her today, but now I've just had a phone call from her, and my D-dimer (I think that's what it is), is real high, and suspects is another DVT or PE, I'm just so scared, I got lost in the system. And dr Cohen had not been around, so the anticoagulant clinic SHOULD have been keeping an eye on me, but I slipped through the net, and Dr Cohen was not happy.

    initially I wanted to know what D meant as I was shocked to hear dr Cohen, so I missed the beginning of the conversation, and she had said this "D" was very high, so I've git to go to the hospital etc, I've just had enough, I'm losing all my hair, my thyroid had come back (last week) very high. And other issues, I just feel exhausted, and just had enough, it's been going on to long, 1994, and it's just getting worst, I would understand if I was older, but I was youngish when it all started.

    Thank you anyway for your quick reply.



  • I'm sure Dr Cohen will now get on top of things for you. She spoke at Patients Day so we are familiar with her work. Good Luck and please let us know how you doing. We are always here for support.

  • My INR range is 3.5 with Fragmin, over 3.5 then I stop the Fragmin and they like my INR to be around 4.0-4.3.

    I've had so many DVTs and PE's, I had a PE last Nov, a DVT with a INR of 4.2, it was a big one that was stuck behind the knee. I've been on Fragmin twice a day for a year, but got to ill and the anticoagulant clinic put me back on Wafarin last week and saw Dr Cohen today. (She was not happy that I was unseen with my history)

  • Thank you very much for your support.


  • Hi Firefoxie007,

    On the other question you answered that you had an INR of 2.8 and here you talk of an INR of around 4-0 - 4.3. An INR of 2.8 is too low and can cause a clot or DVT.

    I wonder if those high INR-results are taken by fingerprick test ( are you selftesting?). In that case they can be higher than an INR in the vein because there is often a discrepence between those numbers.

    You can not count on INR when taking Fragmin.

    Best wishes from Kerstin in Stockholm

  • I was self testing, on Wafarin, when only on Fragmin, I know that you can't test. At first when I first had APS, my INR range was 2.5-3.0 but having so many clots, they increased my INR levels. I also have a situ in place, so you would think I would be ok??

    What sytoms are alike with APS and ME?

    Kind regards


  • I do not know your symptoms but I think you talked ot a stent last time. I feel when my INR is too low and get my neurological symptoms back. Read about APS as much as you can. Knowledge is power! Then you know what questions to ask your Specialist.


  • As to MS and APS; it is very unusual that we have both the illnesses. They are often mixed together especially by a Doctor who does not know APS very well and does not know that the symptoms are very alike.


  • As regards to my INR. It was 2.8. But they told me they would prefer it to be around 4.3.

    If it goes under 3.5, then I'm to take Wafarin plus 10,000 units until it's back to 3.5.

    Hope that's clearer.


  • So you are back on Warfarin and selftest. You do as I do and take a Fragmin-shot when the INR goes too low.

    As i understand you have to take care because as you wrote before your selftesting value in the finger was much higher than the veintest at the lab and it is the vein-test value that counts!


  • Was it a D DImer test? Most likely that, and also thyroxine, often the only drug prescribed does not suit everybody, the tests I do privately are these: You also need to check your iron levels, and if your iron is low, iron needs to be upped, also any thyroxine or other thyroid medication not taken within 4 hours either side of iron supplementation. MaryF

  • Also check your B12 and vitamin D also. MaryF

  • Thank you, I also did not know that the self testing machine showed a lower INR. So thank you. . I will have to look more into the clinical side of APS as I thought I knew quite a lot but it seems that I don't, but the 2 main clinical nurses that dealt with me at UCH hospital had left, the other 2 that are left don't know my case plus their knowledge of APS seems to be not as knowledgeable as the other nurses, plus being short staffed, I was over looked. That's why my health is all over the place.

    Thank you very much for help.regards


  • Hi Tina,

    No Tina the selftesting machine showed a higher value and it is the vein-test value at the hospital lab that counts.

    You must have to find out how it is. They have done doubletests within 4 hours of the two values (fingerprick and vein) and some of us have the same readings but some also have a difference between the two readings.

    You talk with Dr Cohen about this. She knows. Then everything will be ok.


  • Regarding self testing, and I'm only speaking from my personal experience here, the machine may not give an accurate INR if you are positive for the Lupus Anticoagulant (LA). I'm in the states and tried to self test years ago. I brought the machine to my doctor's office and tested it along side of the veinous draw. The results were wildly inaccurate. My doc called the company and it turned out that the re-agent used in the machine was not recommended for people with the LA.


  • Hi Holley, It can be ok if the DIFFERENCE IS ALWAYS THE SAME (with a discrepence of an INR of 0,1 - 0,4).

    I have LA and all the antibodies and there is 0,7 - 1,1 between the two testresults for fingerprick and vein-draw. The machine-value is higher.

    I have done doubletests for a very long time and it is ok from Roche and my Specialists to carry on. I test every second day and monitor myself.

    Best wishes from Kerstin in Stockholm

  • That's awesome that it worked for you. Unfortunately, it wasn't always the same, 6.2, 5.4, 8.7... all over the place. It may also depend on the brand of self test machine.

  • Sorry about that! Those things happen.


  • Hi this happened to me i am not aloud to self test nymore as my INR is all over the place they like it 4/4.5 as i have had so many clotts and PEs,


  • Hi am a 55 year old man, have had APS for 15 years, and I have been told that on some testing, initial "markers" seem to indicate MS. Then when final results come in they have reversed that. I have heard that several times over the years, to the point when I hear it again I just think, yeah...right. Keep in mind doctors "practice" medicine. On us. My case has continually baffled doctors, and they almost lost me in 2012. I like to keep them on their toes. That is my experience anyway !

  • Hi,

    I've just return from UCH and had a Doppler test and found no clots but my D-Dimmer is very high so I have a blood clot some where. So they have decided to put me back on Fragmin 10.000units twice a day. Until next week, then they will decide what to put me on. But it's scary knowing that I've got a clot somewhere.

    It's a filter that I have but its in my groin, but I'm scared that if the clot is elsewhere. But I'm not God, nor a doctor, but it's scary.

    My thyroid levels are still high, they put my thyroxine a couple of weeks ago, how long nots it take to level out or do my dosage need to be higher. ???

  • Hi again,

    Good that you have sorted it out and that you are on Fragmin x 2. Easier to follow than Warfarin. Hope the thyroid levels will also get down. One thing at a time, or do you not think so?

    Do not be afraid for a clot. What is important now is that you stay in range with your Fragmin and avoid further clots. I think I have had a lot of miniclots but therefor I try to keep in range with my INR.

    Sounds good that you have such a good Specialist. That is also important.

    I am happy for you that you are better protected now.


  • Thank you for advice. I think the only thing I did not like is the fact I have a clot but don't know where it is. I know I'm on the right treatment, but I'm losing places where I can inject myself. I was on Fragmin for a year and I've got so many Haematosis. They put me back on warfarin and within 3 weeks I have a clot. I wonder if I could get the district nurse to do one of my injections?? As you know I'm wheelchair bound, so the district nurses already come round once a week for my legs. (Ulcers).

    I thought that all my health issues I should have when I'm in my 70-80yrs, not in my 50's. lol. Otherwise I would cry. Thank u again

  • I am bewildered. My INR is always between 2&3 and I don't have any symptoms of anything, am I missing something here? I take 12.5 mg of warfarin daily.

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