not so lucky

[packerfan]

I suffer from aps. diagnosed in 2009 and have yet to have any medical intervention with the severe dizziness, and lightheadedness, the only time it does not affect me is when i am sleeping. I have had enough. all the doctors I have seen for the last ten years are useless greedy sob,s who see only dollar signs when i come in and do not care about helping me- not even trying

[MaryF Administrator]

Sorry this is happening to you, have you seen anybody, specifically who know about Hughes Syndrome/APS? You need expert advice from a specialist who understands this disease and is up to date with their training. MaryF

[packerfan in reply to MaryF]

have seen to many doctors none who did nothing to try and stop this dizziness. done with doctors now a DNR

[MaryF Administrator in reply to packerfan]

Sorry you are having a dire time with all this, but have you actually seen a recommended Hughes Syndrome/APS specialist? If not, it would be beneficial to you. our members on here will know who is nearest to you, and also we do have a few on our charity website, a lot of us have been through similar, and only had decent change when we saw the right person. If you are feeling depressed please seek help, you are not the first to feel this level of frustration and misery with the medical profession. MaryF

[packerfan in reply to MaryF]

Mary I have seen neurologists, hematologists, rheumatologists and nephrologists . none of which have helped except empty my wallet. no longer willing to see or trust doctors, unfortunately I have one to maintain my medicine renewal. 10 years is long enough, in my case it is to far to long.

[MaryF Administrator in reply to packerfan]

I hear your frustration, and many of us found the same, if we say saw a neurologist, haematologist or rheumatologist as a professional, rather than one of those trained and up to date with Hughes Syndrome/APS. I sympathise, and if in the future you want recommendations for one that people actually see on here, having had a similar history of misdiagnosis to yourself, do come back to us. MaryF

[packerfan in reply to MaryF]

Thanks and glad you let me vent

[Ozchick]

Are you on any blood thinners at all? As Mary says, the right specialist is very important - as is the right level of anticoagulation. It's worth travelling if someone in th US can point you in the right direction?

[packerfan in reply to Ozchick]

done trying cannot walk strait line not willing to see any more doctors

[KellyInTexas Administrator]

You caught my attention with light headed comment.

Has anyone tested you for dysautonomia/ POTS?

It’s very common with APS.

You need a neurologist. Dr Robin Brey - UT San Antonio health science center ( called the MARC) can be reached if your doctor had a question. She is an APS Specialist Neurologist.

[daisyd]

Hi I had really severe Dizziness, I think caused by the sticky blood

I have betahistine prescribed by my Doctor an absolutely brilliant drug prescribed for, menizures disease which I haven’t got but it stopped the dizziness

Also hydroxychloroquine by zentiva helped my balance and I could actually walk in a straight line good luck hope it help you too

If your dizziness comes on in short spells pinch your nose and blow like you do to clear your ears during a flight. Please let us know how you get on

Hope this makes sense

[daisyd in reply to daisyd]

Meniere's Disease

[GinaD]

APS can be quite the frustrating disease to have as the symptoms can be very individualized varying from person to person. From a doctor's standpoint that makes diagnosis very challenging. Doctors are carefully taught in med school to avoid prescribing blood thinners without good cause as they can cause life threatening bleeds. This is why seeing a doc experienced in treating APS is essential. Experienced docs , to echo those Farmer's Insurance commercials, have seen a lot and so know how to treat a lot.

A helpful patient tool is to keep a written record of symptoms and dates. Also, remember that doctors are going to factor in a patient's mood and affect. And, us patients are often anxious, nervous and in pain at time of appointment. Which is why we also profit from having a trusted 3rd party present -a spouse, relative or neighbor.

Don't give up. If APS is causing your dizziness you might try self treatment with aspirin ( and if so, add that to your journal, ) but the best course is to see an APS specialist and be open to the doctor's suggestions. Neurological symptoms can have many, many causes. And just because you have APS does not always mean that is the cause of the dizziness,

Stay strong. Fight on, And we on this site are here for you.

[Lure2]

Hi packerfan!

I read about you and I can not see that you have been on Warfarin but other anticoagulations.

You have got neurolgical symptoms (dizziness and falling) and also replaced your heatvalve. I have those symptoms (pulmonell hypertension and leaking heartvalves) but steady at present as I have to get a rather high INR of around 4.0 to feel ok.

I can understand that you are tired of Doctors. You live in the US (I am in Sweden) and it can be difficult there to get to an APS-Specialist of autoimmun illnesses who works with people like us daily. But we just have to look for that Doctor! He understands that you need a good anticoagulation and that we do not bleed from this illness but clot a lot and need a rather high INR. I had awful dizziness and also fell a couple of times. Too low oxygen to the brain and too sticky blood!

I wish you would believe me after writing this to you but I am not sure. Hope you do!

[packerfan in reply to Lure2]

have been looking for the past ten years and visiting them none of whom have even tried to help no more searching no more wasted visits just need doc for renewing scripts

[Lure2]

Are you also positive to Lupus Anticoagulant (one of the 3 antibodies they test to get a diagnose from the blood)?

[packerfan in reply to Lure2]

yes I am no longer willing to ask doctors to help stop dizziness

[Lure2 in reply to packerfan]

That is so sad really as we all need a Specialist who works with APS and other autoimmun illnesses and who knows that we have too thick blood and that the brain need oxygen to work properly and when the blood is too sticky we get these symptoms.

Especially if you are Lupus Anticoagulant like me also you are a bit like me with your APS and I understand you so well and I can tell you that I have been on this site for at least 6 years almost every day. I just take Warfarin for my neurological symptoms and try to get APS-sufferes to a Specialist, but as you live in the US I know it is difficult but we have here some persons from the US that may be able to help you to that Specialist........it sounds if you are asking for help but do not know what to do. I assume you have been reading a lot of APS as then it is easier to know what APS is - too thick blood.

So many APS-sufferers here I have met during these years when prof Hughes still was working and how most of them must take a "fight" to get to a Doctor who understands APS. I am so lucky (I know) to be able to get the help here in Sweden but I have also had to fight to get what I want.

OK ........ I know I go on too much now. It is your body and your decision and I understand that.

I know I would not be on this site as nobody believes me any more. It is like taking to "deaf ears" nowaday. Why.....?

[packerfan in reply to Lure2]

I have been on this site for ten years and weened myself away

I have seen many doctors and tried being nice , begging , being pissed off , arguing, and walking out without any more appointments because they could do nothing and did not try. If I ever decide to go again it will only be with a garentee.

[Hidden]

I have APS and also had severe dizzy issues that turned out to be BPPV (easily curable, but very upsetting and difficult when you have it). Worth ruling it out. It may be that this is something that happens more often with people with APS...

[packerfan in reply to Hidden]

in ten years no one checked and no suggested having it checked. not willing to see any more useless doctors who will do nothing I want guarantee they will at least try

[Hidden]

You can actually do the Brandt–Daroff exercises yourself (they're easily googled) and there is an Epley Manoeuvre you can do to diagnose BPPV, which is described here, if you want to do it on your own and rule it out. Though they recommend Employ Manoeuvre to be done by doctor. But Brandt-Daroff can be done yourself - and may help, worth a shot: en.wikipedia.org/wiki/Benig...

[Lure2 in reply to Hidden]

Hi tractorshed,

I saw your last question here and I understand that you have not seen an APS-Specialist yet and you are not even anticoagulated for you APS.

Who diagnosed you with APS?

You write of a dizziness I also had. It effects the balance (bad vertigo) and the inner/middle-ear and in our case it is caused by micro-emboli. I saw one of the best Balance-expert we have in Sweden. He said I needed Warfarin. I got it because of a lot of TIAs with neurological symptoms.

Look yourself for a Specialist of APS (!) and ask for a trial of LMW Heparin for a couple of weeks to see if the symptoms will be better. I suggest you read "Sticky Blood Explained" by Kay Thackray who has our illness herself.

[Hidden]

Hi Lure2,

Sorry for any lack of clarity in posts. I have seen specialists quite a lot over the years. I just have a long wait between visits (as there are so many people waiting to see one). I was diagnosed by a specialist years ago. The one who made the diagnosis is now retired.

In my case the severe dizziness (it ended up with me in A&E at one point as was scary) did turn out to be BPPV. It could, of course, be things related to APS a lot more directly - like the thing you have experienced. I haven't had symptoms though since the treatment for BPPV, so I'm thinking the doctor must've been right. There's nothing that means that symptoms are not more than APS or Lupus.

I've had Heparin at times too, but am currently on mini aspirin only. Interesting to know that there are other dizziness symptoms more directly related to APS. Something for me to bear in mind if it happens again. Thanks.

I'm put off reading Sticky Blood Explained by the price! And because there is lots of information on line nowadays.

[Lure2 in reply to Hidden]

Who told you to stop taking anticoagulation?

I bought my first "Sticky Blood Explained" in pocket here in Stockholm. The second edition of the book is practically the same, so you could buy the first edition if it is cheaper. I have both.

When did you have your last "dizziness"? Did the LMW Heparin help you with your symptoms?

[Hidden]

The dizziness has not reappeared since treatment for BPPV. I had tinnitus as well and that also has gone following tinnitus treatment (the balloon & anti allergy stuff). I've been told that people with APS commonly suffer from tinnitus and balance/dizziness issues - but the reason for this isn't clear it seems. In my case I wasn't given Heparin to help with the dizziness (haven't had heparin for over 10 years), and the issues resolved themselves with the other treatments.

[daisyd]

Really pleased for you