Mis-diagnoses?

Hi everyone, Happy New Year. I was diagnosed with APS in 2008 at St Mary's hospital, London(early MC hospital). I have visited St Thomas also as an APS patient. Last month I saw a hematologist. It was a bad day for me as I was feeling smoggy/confused. I had questions to ask but never got around to any as this young Dr told me that he did not think I had APS and if the next blood tests were negative, that would prove it. I tried asking him which criterion he was using to conclude his information. I explained that St Thomas are the leaders in this field, his answer was concise: yes but they are not hematologists are they! He tried reassuring me that it was indeed good news that I did not have APS.

After I returned home I had a complete panic attack! Much as I do not WANT to be ill, the fact that I AM is testimony to the fact that something is causing it! So to be told 7 years after a diagnoses that I am fit and healthy doesn't seem like good news at all when considering the fact that I am still suffering with migraines, lethargy, confusion, livedo rash etc etc, and that I thought I had gained answers to close my 5 MC's and Emergency Ectopic Hemorrhage. Now it seems I have to re-wind to 7 years ago and start all over again!

His reasoning was that I have only ever tested positive to IgM and not IgG.

In my research and according to the revised 2006 Sopporo Criteria (Laboratory criteria)

'aCL antibody of IgG and/or IgM isotype in serum or plasma.

I think that clearly states IgG and IgM or IgM alone.

I think my IgM has been marked as 5.5, 17 and 7.4 and in the original diagnoses I had abnormal DRVT written down on two seperate occassions. More recently my results are proving negative.

Can anyone shed some light for me here. Have I been mis-diagnosed by St Mary's Hospital in 2008?

13 Replies

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  • Patients can go in and out of positive/negative testing, and indeed there is now a section on the charity about Seronegative Hughes Syndrome. I suggest you write a very strong, but polite letter to them copying in previous paperwork from St Thomas's Hospital, there is of course plenty in the way of pinned post about sero negative Hughes Syndrome/APS on this forum. If they have removed your medication after going against St Thomas' naturally you will hold them fully responsible should anything happen to you. MaryF

  • Hi and welcome back!

    1).First of all if you have been diagnosed they can not take that diagnose away. Anyway I do not think they can. 2). Antibodies to IgM should be enough.3). Livedo Rash (Livedo reticularis) is said to be a living proff of APS and that APS is "Active".

    I have all the antibodies (Always been positive) and in high titres.

    As Mary says antibodies can be positive or negative or never negative or never positive. That does not matter!!

    Please forget about what that doctor told you. He did not know of APS as he did not know of negative APS-patients.

    Are you on any anticoagualtion drug? Please stay on here.

    Best wishes from Kerstin in Stockholm

  • Help! I have one neg test 5 years ago , livedo for years plus other conditions but St Thomas's say not got APS. Are there diff types of livedo?

  • That i do not know but Livedo Reticularis is a blue/red special pattern. I have it not always but can have it on my thighs. My Rheumatologist has seen it.

    Look it up!

    I am not a doctor so I can only speak from my own knowledge. Listen to MaryF what she says. She knows this illness very well and knows how to act in special difficult situations. I am from an other country and do not know your health system well enough to have opinions.

    Take it easy and I am sure it will be ok.

    Kerstin

  • Thank you so much, not stopped researching, still amazed at what I read.

    Doctor helping this time so hopefully I will get to the bottom of this.

    Thank you again.

    Deborah

  • I tested positive for the Anti-Beta 2 Glycoprotein 1gG Antibodies. This test has only recently been added into the diagnostic criteria for APS. I did not test positive for Anticardioliphin Antibodies. I tested positive for Lupus Anticoagulant, but it can't be confirmed because I was on blood thinners at the time. I also have high Titers of the Anti-Beta 2 Antibodies. I think I read that the 1gM Antibodies are more to do with arterial clots and the 1gM have more to do with venous clots. Don't quote me on that though. We're all different. We all have different manifestations of the disease. I would have been considered Seronegative before they had the Anti B2GP1 testing criteria. I think if you were diagnosed with the disease, you have the disease, and you should not ben taken off of blood thinners.

    I'm a different story as I have had massive clots, and I have a vein in my right leg that is so severely damaged, I would clot up without blood thinners - even if my APS went away! I think you just need to calm down and realize that your doctor is wrong. If you have to, please request to see another doctor. Warfarin is very inexpensive if you need to pay for it cash. It's the INR tests that are what costs a lot of money. If you need to go private in order to keep your blood thinners, please do so. Do not let this doctor take your life into his hands. I don't understand why so many doctors are jealous of DR. Hughes and continue to dispute his diagnosis. Their egos are too big to take into account their own patients health and well being. I hope you get this issues resolved. You shold not be treated this way!

  • I too have been " de-diagnosed" by the hematologist who monitered by bridging off and on warfarin for hip surgery last year. All my blood work has been " boring" ever since I went on a gluten free diet in 2004. This new hematologist says the evidence for his recommendation that I discontinue the warfarin is based that I never have had a positive a positive beata 2 glycoprotein (this test was not administered when I had my mini strokes in 2000.) Also, all that scary, positive blood work dating back to 2000 has been "lost."

    So I can relate to your situation. I was first told that "once positve over a 3 month period with attending symptoms, always positive -- even if the blood work goes down.)

    It is frustrating, isn't it? You fight to hard for a diagnosis and the recognition that you're not just "making it up," and then -- poof!-- suddently you're de-diagnosed without any plausable explanation about the origin of those original, life-threatoning symptoms.

  • And the de-diagnosing doctor also referred to IGM which he said has been proved to be an unreliable marker whose fluctuations no longer are accepted as indicative of any chronic condition. So . . You doctor's dissing of IgM is not peculiar to him.

  • I was diagnosed by my gynecologist after blood work she ran after two miscarriages in march 2014. I recently saw a hemotologist and she also said we need to run same tests as you can test negative and the criteria for this disease is two positive tests. Not sure of the specific antibodies levels. She told me shes pretty sure I will as I tested high on 3 things and one is a rare one.

    She did state that you can test positive and then negative as they do not know what causes this disease.

    Hope this helps as why they definitely de diagnosed you

  • I have seen Prof. Khasmashta & prof. Hughes. I tested positive & then tested negative several times after that. What you have to understand is that they are testing our blood for only 2 proteins. There are many more proteins involved-something like 20. They test for only those 2 because it is cost efficient. So I am what they call Sero -negative. My history & symptoms tell the Prof. That I have the disease. Also Prof. Khasmashta said this disease never goes away. Once you test positive for it you have it. Find another dr. That is more knowledgeable with APS. you need someone to understand your symptoms & treat you.

    Best of Luck designer16

  • Thank you everyone for your passionate comments. Unfortunately it is not so easy for everyone to go private, my budget will not permit, but for those of you who can I guess this makes things easier for you and for that I wish you all the best. I have been disappointed by one of the Dr's mentioned here, he phoned me at home and reduced me to tears regarding my tribunal with the DWP (which I wan without his help)

    I would very much respect an appointment with r Hughes but alas cannot financially afford such a privilege.

    Thank you Mary you reminded me to be articulate with the relative information on the 'Charity website' I can't afford a printer but will endeavor to find away to print off and be fore-armed for the next appointment :) I did take an analysis of zero negative with me but the Dr I saw didn't give it a glimmer!

    Kerstin, it was so nice to be 'welcomed back' by you, your opinions are interesting and I thank you for your support. Debs, Im so glad the Dr's are helping you, you are truly blessed! Are you a private patient?

    Gina, yes we really do have to take ownership of this illness, I have always felt so alone with it. Like you I have made big changes to my diet, gluten free being one of them. I believe in the power of taking responsibility(you may like to read my article on spanimax.com. Thank you for your support.

    Sirclotsalot, Yes I will keep calm he he! Unfortunately a mis-diagnoses will not go down well with the DWP so I think this means they will finally push me back to work and I just don't feel well enough. I resign my fate to the universe, what will be will just have to be!

    Goofus, your support was a help, thanks.

    Designer16 you have given me a lot of ammunition to go fire the next Dr I see with, great thanks

    How wonderful to have support from this community, thank you with all my heart x

  • First of all I will just mention that if you go to your local library, they will print out anything there that you want so you don't need to have a printer at home.

    Secondly, its not surprising that some Dr's won't help with reports for the DWP. The paperwork that they now need to supply is quite demanding and as we all know that system is set up to fail anyway. Unfortunately the only way that you will be successful with any claims with the DWP is to put in the hard work yourself. Get the report from the Dr, specialist, GP yourself. Get information from the HSF website and send that in too. I sent them a book! They say on the forms that there is no limit to what you can send so blind them with what you send. Its up to you to do the research and show them how passionate you are about it. Join Benefits and Work who will supply you with fact sheets about how to fill in claim forms in a step by step way. If you do all of this properly and you send ALL your forms in WITH the letters and don't send the forms in and expect the DWP to chase the reports for you, then you have every chance of getting what you need. I did it and many more do but Im afraid it takes many months of hard work to do it which is exactly what the DWP want to see. Do a bit every day spread over the weeks and don't leave it till the last minute. Good Luck.

  • APsnotFab, thanks for your comment. First of all, I'm also a regular user of my local library, (great minds think alike !! :) It is not always possible to be pro-active when unwell however..but I do my very best! Secondly, I think you missed the bit about the fact that I WAN my tribunal with the DWP due to the fact that I did all the things you mentioned and more. However, in my personal experience I honestly think that the judge based his final decision simply on the fact that he was presented that day with a really sick candidate.

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