German with so many questions

[my_mosaic]

Hello everyone!

My diagnosis is not definite yet as the antibodies haven't been confirmed but my doctors already told me that no matter the next antibodies tests will show I will receive life-long therapy.

I tried to google and get answers from my doctors but didn't find much in German, the English sites were so much more informative.

Brief history of mine:

-starting to show neurological symptons around summer 2012, mainly bladder in the beginning, lost ability to walk properly in 2013, got it back after physiotherapy, still sometimes have problems, especially with stairs (legs start to burn as well when walking for longer distances and my muscles get weaker more easily and my balance is poor)

-low-grade ataxtia was confirmed in 2016, multiple sclerosis and spinocerebellar ataxia was ruled out

-constant headaches that would not respond to pain meds (those started around 2012/2013)

-eye-movement disorder confirmed in 2016 (slowed pursuit and increased saccades)

Noone knew what was causing those symptons so eventually I was told it was psychosomatic. I just got used to it even though I lost the ability to do certain things like horse-riding as my legs just wouldn't work right.

In March this year I was diagnosed with DVT which was quite a shock because there were no risk factors at all. I am neither obese nor do I take the pill nor am I old enough - at least I thought so. I am 29. Back then, I just thought it was a strained muscle.

Was put on Pradaxa and then some great things happened. My headaches vanished and my legs stopped burning when I walked stairs or longer distances. After three months they stopped the Pradaxa therapy and I was sent to a German university hospital to get blood screenings done.

I tested positive for AntiCardioplin and Anti-ßeta-2-glycoprotein and my titers were really high. Negative for Lupus anticoagulans but also positive for Faktor-V-Leiden-mutation so I was classified as high-risk-whatever and went straight back for Pradaxa. The university hospital doctors were quite clear that it was crucial for me to stay on meds at least until the antibodies vanish.

Now I have so many questions and even though my doctors are really supportive they cannot answer all of them.

1) If I got it right there is still a chance that those antibodies won't be confirmed and therefore I do not have APS? My doctors told me not to hope as my titers were so high and after going through my medical history again they even think it wasn't my first thrombosis. Does anyone know if it ever happened? I mean that the antibodies were just positive once?

2) In case the antibodies are confirmed in October what kind of doctor should I see? Frankly, I haven't seen many doctors and tried to avoid them because it is no fun to suffer and then be told it is all psychosomatic. The only times I went were when my family urged me, especially when I started to fall down stairs more often as my balance got so poor. I even didn't want to see a doctor with the thrombosis until somone made me promise to go. So I would like to know what kind of doctors I should see and what kind of doctors I can avoid. The less the better.

3) Is anyone here with long-term experience with Pradaxa? I know that Pradaxa was introduced only a few years ago but maybe someone takes it for a few years now? If you could share your experiences I'd be really glad. I like the drug because I have no to little side-effects but if I need to take it for the rest of life (and none of my doctors is willing to put me off ever again, instead told me to adjust lifestyle to life-long therapy now) I would be happy to learn some long-term experiences.

4) Last question: Any singers here? I am in classical training and Pradaxa seems to have an influence on my voice but I learned that anticoagulation drugs can increase the danger of microbleedings on the vocal chords. Does anyone else experience problems with voice while on those kind of meds?

I am sorry for this novel but there are so many things I feel insecure about and being told not to hope for negative antibody test results was a blow.

Thank you so much for taking the time to read this. Apologizes for my English and a heartfelt thank you for any answers, they'll be appreciated! Thank you!

[charlieab]

Im not going to try and answer the technical questions, as people much, much, more knowledgeable than me will be along anon. Mostly wanted to wish you all the best. Sounds like you have had a long and tough journey in recent years. If it turns out to be anti-phosphoipid syndrome (APS), and you have had a DVT, then you may be put on an anti-coagulant like warfarin or heparin, or aspirin (which strictly speaking isnt an anti-coagulant but has a comparable effect). These can make an enormous positive difference to symptoms, including dizziness etc, and daily life I think.

I think, and others will know, that there have to be two positive APS tests 12 weeks apart (but check that), for APS to be diagnosed according to the standard criteria. Though there does appear to be a sero-negative APS, which might simply be that the anty-body (bodies) causing it has/ have not yet been discovered and so is/ are not tested for in the APS tests.

As to the kind of doctor, I think ideally you would need a rheumatologist with a specialism in APS. But you may also need to see other specialists, such as opthalmologist to check eyes before starting on any drugs that could affect eye sight.

Hope this helps a bit. But ,like I say, others will give you a much clearer picture.

best wishes

ps I sympathise with people saying stuff is pyschosomatic. The research lit is full of this where phsyical conditions are misdiagnosied as mental health ones. When I got worse and worse tinnitinus (ending up with 8 plus loud noises) and then visual intrusions (like double vision and flashing lights) started, my GP started to imply that it was just depression. Until they did an MRI and found an army of white matter lesions in my brain and my fingers swelled up and legs turned purple and arthritis appeared from nowhere in all the joints they x-rayed. Not that they have apologised for not being able to recogise a systemic autoimmune disorder when it was staring them in the face.

OK thats my rant overw ith.

[my_mosaic in reply to charlieab]

Thank you very much for taking time to answer! Yes, being told it is psychosomatic isn't great, especially when some doctors say that there is no way it could be psychosomatic and still one doesn't got an answer. I am very sorry to hear you had such a tough time. Hope things are better now.

I sometimes have double-vision aswell, too. But I think Pradaxa (it is an anticoagulant) helped with that.

Thank you for your tips and advices!

[Elfie1 in reply to my_mosaic]

Hi, ich wuenche ihnen alles gute und hoffentlich findensie einen guten Rheumatologist .Elfie

[my_mosaic in reply to Elfie1]

Vielen lieben Dank! Thank you! I hope so too.

[charlieab in reply to my_mosaic]

Thanks. And keep us updated.

[charlieab]

apsnotfab replied while I was writing my long rant! sorry for any repitition.

[charlieab in reply to charlieab]

me repeating stuff I mean.

[my_mosaic]

Thank you so much for reading and your helpful answer!

My doctors already said they wouldn't wait for a confirming test but treat me as if APS is already confirmed and your explanation helped me to understand their approach.

I'll try to find a specialist then but that looks to turn out tricky. The university hospital should be able to help me with that though, right?

Pradaxa is not approved? That would be a pity because I really like it, especially since there is an antidot and my symptoms improved under Pradaxa. I'll address that issue though the next time I'll see my doctor. Thank you for letting me know!

I am sure there'll arise more questions but the most urgent were the ones above. Thank you so much for answering!

[Manofmendip]

Hi and welcome

I agree with what my colleague APsnotFab has told you and, in the UK, Pradaxa is not licenced for APS treatment. I do not, of course, know whether it is in Germany.

Keep in touch with us.

Dave

[my_mosaic in reply to Manofmendip]

I was sure I had answered you already. I am sorry. Thank you so much for your answer.

I will address the Pradaxa issue for sure the next time I see my doctor and will share the Information here if it is helpful to others,

[KellyInTexas Administrator]

I would also add with the vision ( I have really struggled with this one- a little more than most so don't worry- just so you know the parameters) - please check your eyes for auto immune optic neuropathy. Tiny blood clots , or even sludge blood with not enough oxygen, but in my case tiny micro clots, repeatedly hit my optic nerves. My optic nerves are way too thin- I've lost too many optic nerve cells. This has caused my optic discs to become very pale.

I also am having some central brain processing problems- also due to APS. I'm having problems holding images steady also. I'm going to look up the words you are using. I've not heard these terms in English before. ( ich spreche auch deutsch, wenn es vielleicht besser auf Deutsch übersetzt?)

Thinning the blood should really help. An APS specialist will help you determine what your INR ( international Normalized Ratio) should be. I'm not familiar with the medication you are on. I'm not sure if it deals with an "INR" but I'm quite certain it does not.

I'm glad you are better on the medicine. The fact that you feel better ( no headaches) tells me that you are doing better! Like APsnot Fab said, I don't think it's approved, so for the long haul management, it's best to quickly get yourself in the right hands. Get it figured out now, and you couldn't have landed in a better place than here.

[my_mosaic in reply to KellyInTexas]

Hello and thank you so much for answering!

Ah, yes, steady pictures - when I move my head too fast or am in an accelerating car it is like my eyes are to slow to follow so it is rather like the pictures flying in and sometimes focusing on a certain Point is really hard for me.

My eyes were checked last autumn and back then everything looked fine but I will Keep it in mind!

I don't know the exact terms. The neurologists do this test where they wave a finger or a pen in front of my face and I have to follow those movements with my eyes. And that "pursuit" of movement is slowed. Additionally, my eyes make extra movements to focus on a certain point, those rapid movements we make when focusing? Those movements are called saccades and mine are increased.

Thank you for the advice on medicaments! And yes, within just a few hours I got some answers that really helped me.

[KellyInTexas Administrator in reply to my_mosaic]

I was referred to a " neuro Opthomologist " . I believe this is the sub specialist you will need to see regarding your eyes. I looked up the medical terms you posted regarding your eyes- yes. Exact translations. I've learned something from you- thank you! I believe this is exactly what I'm experiencing. I had thought it was oscollopsia, but I believe what you write is more on point.

I see Dr John Carter in San Antonio Texas- neuro Opthomology- university of Texas research university. For you to see what kind of physician this is. Neuro Opthomology.

[KellyInTexas Administrator in reply to KellyInTexas]

By the way- seen with APS, sorry to say...

[KellyInTexas Administrator in reply to KellyInTexas]

I'll tell you more about this- it's a processing disorder. It's a reassimilation disorder. Read up on this kind of doctor and then ask me about catching a red apple 🍎 that I toss to you to catch. This is the example that Dr Carter game to me to explain the problem to me. ( a lot has to happen between the brain and eyes...) the brain fragments info- this is normal. then has to re- assimilate the information to make the catch a smooth process.

I have a glitch in the process. You may also it sounds like.

[my_mosaic in reply to KellyInTexas]

Yes, I see your point. My doctors are really great and eager to help so I'll ask them to help me to see a neuro eye doctor. Thank you again for telling me that such specialists exist!

[my_mosaic in reply to KellyInTexas]

Nothing to say sorry for. My doctors and me know there is something not ok with my brain it was just the question what was causing it. Again, thank you so much for helping and understanding, it is nice to meet someone who experience the same even though I am sorry to hear you do.

[my_mosaic in reply to KellyInTexas]

Oh I didn't know there is such a specialist. I am sometimes worried about my eyes because it gets worse. They noticed it for the first time in 2013 and it was confirmed as an eye movement disorder in 2016. Thank you very much! You helped me a lot and I am glad I could be of a little help.

I am sorry to learn you experience the same because it can be quite annoying. Did your doctors do anything special about it? Is there anything that helps you with it? Because there is nothing I can do except closing my eyes and that is not a strategy.

[KellyInTexas Administrator in reply to my_mosaic]

Just thinning the blood. This is why I really want you to see an APS specialist. ( like APsnot Fab. ) we are slightly concerned about Pradaxa because it's not usually the norm.

It all comes down to if you are experiencing vascular events only, or if you are having arterial events. Remember, arteries can be very tiny indeed. If you experience cerebral involvement ( usually indicative of arterial involvement) or have venous involvement involving more than one clotting event, you need an INR higher than 3.0, and it's warfarin only. Otherwise the only NOAC drug approved is rivaroxaban . ( in the USA the brand name is Xeralto.)

This is a little bit of an advanced discussion at this point and I worry it may feel overwhelming- don't let this overwhelm you! You are one sharp young woman! You have youth on your side. We can help you prevent further damage by addressing this correctly - immediately.

There are a few very important key critical things to learn. First things first. Let's get the second set of antibodies results in.

In the mean time look at the section in the forum called pinned posts . The administrators posted the RAPS trial results there. It explains the difference between rivaroxaban and Warfarin very well.

I have to close my eyes also. Contrasts between sunshine and shadows almost blinds me.

[Ozchick]

I'm on a similar med to you (Xarelto) which is one of the newer anticoags. I've been on it for nearly 3 years now and it does suit me very well. These are more expensive than Warfarin and you may well be changed to Warfarin if the cost is an issue. I had clots with both Warfarin and LMWH and this is why it was changed. Pradaxa does have a reversal agent and it is easy to take with no testing for correct levels of anticoagulation. For me, it works well and I've had no side effects but I note that there are some others on here that have had side effects but I don't know what they were.

While the antibodies may fluctuate, if they were high they are unlikely to come down to "normal" levels. My Rheumatologist doesn't bother checking any more after having several high levels. However these new drugs can affect kidney function so my Haematologist tests for this every six months.

Apart from the long road to final diagnosis when I had so many and varying symptoms and every other kind of specialist deemed me "normal" I now feel the best I have in a long time.

I only sing in the shower so as far as I can tell there is no effect on my voice.

[my_mosaic in reply to Ozchick]

Ah, thank you so much! Yes, my doctors discussed several of the new anticoagulants but decided for Pradaxa as there is an antidote for it. And frankly, it is the main reason I want to keep Pradaxa. I feel quite insecure about being more "vulnerable".

They checked my kidney function twice so far. And I think they plan to check it every half a year as I was told that from now on I have to see my doctors at least twice a year. So that should be covered, right?

I love singing so I sing really everywhere. I noticed it takes longer now to regenerate but they couldn't find anything when I went to see a larynx specialist so I wondered if it was connected with the bloodthinning.

Thank you very much for taking the time to answer!

[KellyInTexas Administrator in reply to my_mosaic]

Warfarin takes about 3-5 days to get out of system- but there is an antidote- vitamin k spray into roof of mouth is one- I'm not sure of others. I've never had a need for antidote. ( or surgical bridge.)

[MaryF Administrator]

Hello, it is better to have the diagnosis and the correct anticoagulation than not to have this. Test results can go in and out of positive/negative, it took years for me to pass two out of the three tests.

There is an email address at the bottom of this, re Germany: euroimmun.com/documents/Ind...

Also some names here:

ikbz.uk-wuerzburg.de/filead...

MaryF

[my_mosaic in reply to MaryF]

Wow, thank you! I hadn't seen this document and already read some earlier today but didn't have enough time to answer. Thank you so much for the links!

And yes, I see your point and it is why I will go back to the University hospital in October. Thank you

[Lure2]

Hi,

It must be possible to find a Specialist of autoimmun illnesses in Germany who knows about HS/APS and that we have too thick blood that has to be thinned before we feel ok again.

I have had a lot of eye/ear/brain-issues from this illness. I had an Oftamologist who said to me that I had micro-emboli and should start with Warfarin.Before that I had a Neurologist but those Doctors do usually not "get" that we have very sludgy and thick blood.

After i started Warfarin I did not see double and had horrible Vertigo and lost the sight in my right eye several times. I could read again and the sun and light did not make me feel seasick. I have two Specialists here in Stockholm and I am on Warfarin with an INR of 3.5 - 4-0 and feel best around an INR of 4.0. I selftest.

I think you have got Pradaxa but that is not (as others have told you) the right anticoagulation for you. Warfarin would probably be best as you have got neurological symptoms and you are not positive to Lupus Anticoagulant so selftesting should not be a problem I guess.

Please read also "Sticky Blood Explained" by Kay Thackray. She has got several neurological symptoms from her brain and eyes and writes about other symptoms also and how it is to live with this illness. She had Warfarin when she wrote this book some years ago. Good also for relatives to understand us better.

Best wishes from Kerstin in Stockholm

[nuddle]

What is APS called in German? Would love to discuss this with a german relative.

[Lure2 in reply to nuddle]

Hi nuddle,

Hope you have now seen a Specialist (you talked of a Hematologist 3-5 years ago). You have got LA positive. We need to thin our blood if you have got a diagnose of HS/APS and that is the key to feel better. Yes this illness can be worse if you do not have a Doctor who knows how to treat you and also knows all the different symptoms and is willing to look closer at those symptoms.

It is probably called Hughes Syndrome after the prof Graham Hughes even in German. . Hope you have someone to discuss with, who knows this illness so stay with us. Our members on here know a lot.

Best wishes from Kerstin in Stockholm

[nuddle]

Thank you Kerstin, no, have not had anymore luck putting this together, am getting retested, as the last time it was tested, the lupus anticoagulants came back normal. But symptoms are getting worse again, fuzzy woozy head especially, episodes of vision crossing over and close to passing out, and generally feeling odd when light changes from bright to dull, or other types of bright colours.. all these symptoms lead me to researching silent migraines, which ones again led me to Huges syndrome.

I have a fanstastic endocrinologist, who has now ordered some more tests, and has referred me off to a neurologist.

My main question for asking about the German thing is questioning if its hereditary, if this may actually be a factor in a relatives health.

[Lure2 in reply to nuddle]

Hi Nuddle,

Do you have a diagnose of HS/APS? You have perhaps heard of antibodies that go from negative to positive and vice versa.

If once positive you have the diagnose and will always have it. ( Twice taken with 12 weeks between the bloodtests and both positive.)

As we always repeat here is that the Neurologists do not "get" that this illness is about TOO THICK BLOOD and we need to be anticoagulated steadyly and properly by a Specialist of of autoimmun illnesses who understand this.

Do you at least have baby-Aspirin for your TYPICAL neurological symptoms or is it Warfarin perhaps? If so what INR has he put you on?

I am very afraid that your nice Endocrinologist (they do not understand our illness very well ) will refer you to a Neurologist especially one that do not understand autoimmun illnesses and that you should be anticoagualted first of all to see if the symptoms disappear. I have Warfarin with an INR between 3.5 - 4.0 today.

This illness is now found to be hereditary, that is correct. It can run in families so go back in time and think of someone from older days if they have similar and even heart-issues.

Read also "Sticky Blood Explained" by Kay Thackray. She has got APS herself with neurological symptoms. Please let us hear how it goes for you!

Best to you from Kerstin

[nuddle in reply to Lure2]

Thank you Kerstin,

When the lupus anticoagulant was first found, yes I had two positive blood tests, more than 12 weeks apart, was told only to be careful with hormones, take aspirin during pregnancy and if flying. Nothing else. When II brought it up a few years ago with my endocrinologist it was retested and negative. But. Recently symptoms are making me question it, so same endocrinologist has ordered it to be retested. The nneurologist he wants me to see to rule out any other issues. Am I uunderstanding it. Correctly that HS can cause the neurological symptoms? And no, I am not taking any blood thinning medication, am considering trying baby aspirin to see if it will reduce symptoms, would this affect the blood test results? Am I better off to have the test before starting aspirin?

[Lure2]

Hi,

No the Aspirin will not affect the bloodtests but Warfarin will infere with ONLY the Lupus Anticoagulant test. I take the other two all the time while on Warfarin. By all means try a baby-Aspirin now for a while and see if it will be a little better, but I think you have to take Warfarin also perhaps. Even if the Lupus Anticoagulant are negative - that does not matter - once have it (if the test was ok of course but I guess it was) - always have it.

So if the test for Lupus Anticoagulant was properly done - even if the LA will be negative now again - you have a diagnose of Hughes Syndrome for ever.

Yes, the neurological symptoms, prof Hughes says, are the most common symptoms we get and what I can see after being on this site for some years that is quite correct. Prof Hughes by the way is always right. You should read his books also but first "Sticky Blood Explained".

I wish that you could see not a Neurologist but a Rheumatologist or even a Hematologist as this is a Rheumatical illness and also a blood-disorder. BUT they have to be specialized in our conditions. Very important.

Good Luck!

Kerstin

[nuddle]

Thank you Kerstin