Balance issues

[falling2peices]

Well 2 weeks ago I underwent 5 hours of balance test in a rotary chair and caloric tests not fun I was exhausted. Saw my ENT yesterday and was told I had interesting findings... not what I wanted to hear obviously... he said that during the caloric tests where there was warm air then normal water put into both my ears I had zero reaction so they put ice cold literally ice in water into my ears 3 times. He said most people would be on the floor vomiting I had little to no reaction so he says I have lost inner ear balance sensitivity in both ears there's no doubt about that he said but has no idea how or when. Going for MRI in 2 more weeks and I still don't understand what that all means for me for my future... grrrr it's always something

[MaryF Administrator]

Hi there, Manofmendip is pretty good on balance issues with ears and who he saw, hopefully he will answer you soon, it is not unusual to have balance problems with Hughes Syndrome/APS. MaryF

[falling2peices in reply to MaryF]

Thank you Mary maybe manofmendip will have some input of course I know we're not doctors here just some friendly opinions

[Ozchick]

When the doctors go 'Hmmm-that's interesting' is the time when I panic! On occasion they've also said 'Hmmm-that's weird' and I don't know what's worse!! Hope the MRI shows up something fixable.

[falling2peices in reply to Ozchick]

Ikr when he said my test showed some interesting things I was like uhh 😲 ohh. He's a well known ent around here in Memphis tn usa he works with le bonnor hospital so if he's puzzled I can't help but worry

[Ozchick]

Ah! but ENT don't necessarily 'get' APS-a little outside their field of speciality. However, sometimes 'interesting' can make them research a little further or discuss with peers and come up with an answer.

[falling2peices in reply to Ozchick]

He's definitely putting effort he is doing the MRI but then unlike his usual scan then straight bk to his office he's actually wanting so he can have a audiologist and neurologist go over the fini

[daisyd]

Hi I had terrible dizziness before being diagnosed with Sticky blood I now think it was caused by having sticky blood, I was prescribed Betahistine which really improved it balance problems I had these falling over being really clumsy prescribed placqunil took less than a week to work ( make sure if you have been prescribed it that it is the correct medication from Zentiva)

I see in one of your posts I had terrible restless legs too my iron levels stores were low prescribed iron medication much improved I wasn't anaemic but now cut down on these and its started to come back.

Hope this makes sense, I am not a medical professional so make sure you ask a doctor about this

Wishing you well

[falling2peices in reply to daisyd]

Thank you and yes o have RLS but that's another issue I gotta get checked out my lower legs are actually deforming

[HollyHeski Administrator]

Hi, what a test - waiting for people to vomit!! Thankfully you didnt, not making light of it but hate these Doctors that do and say things like that!

Lets hope the shock of him not knowing whats wrong will spur him to find out and your MRI will show something conclusive, as I can see your life is on hold with this.

Youve got some good ideas here - wish you well xx

[falling2peices in reply to HollyHeski]

Yes that's definitely a crazy test And made the room spin just a little bit apparently if there was no damage I would have been in the floor vomiting sounds bad but I'd rather one day of that then wondering if this will cause deafness or meniers. I think to save what sanity I have left I'm call the dr and ask for a call back to explain to me a little better

[HollyHeski Administrator in reply to falling2peices]

Good idea

[Lure2]

Hi,

Balance/ear/eye-issues are very common with our condition. I saw a Balance-Expert here in Stockholm (one of the best we have here) and he said it was micro-emboli in the inner-ear that caused my symptoms. Very tiny bloodvessels. He suggested that I should try Warfarin. I did!

I had also a left sided Otolite-damage after my many TIAs and perhaps a mini-stroke some time earlier.

When I was properly anticoagulated my symptoms are quite gone but the Tinnitus is there but so little so I do not think of it. I have micro-emboli and clots and they are not seen on a Scan of today. A Specialist of this illness knows that they excist as to HS/APS.

It is important that you are properly anticoagulated and talk with a Doctor who understands this rare illness HS/APS and how it affects our body and brain. Do you also have any eye-issues?

I am also Lupus Anticoagulant positive together with the other two antibodies in high titres since 2002.

Best wishes from Kerstin in Stockholm

[falling2peices in reply to Lure2]

Wow it's amazing how are body's work isn't it. My appt was 32.2 (high)Hexagonal phospholipid neutral was 24. (High)

[Lure2 in reply to falling2peices]

Hi,

I do not know what Hexagonal phospolipid neutral is. I have not heard of it.

The two other antibodies you test for is Anticardiolipin antibodies (aCL) and Beta - 2 - Glycoprotein1 (Beta2GP1). I guess you have been tested already for those two. Perhaps you are going to test the second time for those also but last time it was only Lupus Anticoagulant that was positive I guess.

Kerstin

[falling2peices in reply to Lure2]

Description

Anticardiolipin Ab, IgA <10

Anticardiolipin Ab, IgG <10

Anticardiolipin Ab, IgM <10

Antiphosphatidylserine IgG 1

Antiphosphatidylserine IgM 2

Antiprothrombin Antibody, IgG 6

APTT 32.2 H

APTT 1:1 NP

TNP

APTT 1:1 Saline

TNP

Beta-2 Glycoprotein I, IgA <10

Beta-2 Glycoprotein I, IgG <10

Beta-2 Glycoprotein I, IgM <10

DRVVT Confirm Seconds TNP

DRVVT Ratio TNP

DRVVT Screen Seconds 35.9

Hexagonal Phospholipid Neutral 24 H

LAC Interpretation Comment

Platelet Neutralization 0.0

Anticardiolipin Ab, IgA:

Reference Range:

Negative: <12

Indeterminate: 12 - 20

Low to medium positive: >20 - 80

High positive: >80

Anticardiolipin Ab, IgG:

1

Reference Range:

Negative: <15

Indeterminate: 15 - 20

Low to medium positive: >20 - 80 High positive: >80 Anticardiolipin Ab, IgM: Reference Range:

Negative: <13

Indeterminate: 13 - 20

Low to medium positive: >20 - 80

High positive: >80

Antiphosphatidylserine IgG:

Reference Range:

<16

Low Positive: 16 - 30

Moderate Positive: 31 - 50

High Positive: >50

Antiphosphatidylserine IgM:

Reference Range:

<22

Low Positive: 22 - 35

Moderate Positive: 36 - 50

High Positive: >50

Antiprothrombin Antibody, IgG:

Reference Range:

<21

APTT:

This test has not been validated for monitoring unfractionated heparin therapy. aPTT-based therapeutic ranges for unfractionated heparin therapy have not been established. Consider ordering Heparin anti-Xa (unfractionated).

Reference Range:

18 years and older: 22.9 - 30.2

APTT 1:1 NP:

Testing Not Indicated

Not indicated

APTT 1:1 Saline:

Testing Not Indicated

Not indicated

Beta-2 Glycoprotein I, IgA:

The reference interval reflects a 3SD or 99th percentile interval.

Reference Range:

Negative: <26

Beta-2 Glycoprotein I, IgG:

The reference interval reflects a 3SD or 99th percentile interval, which is thought to represent a potentially clinically significant result in accordance with the International Consensus Statement on the classification criteria for definitive antiphospholipid syndrome (APS). J Thromb Haem2006;4:295-306.

Reference Range:

Negative: <21

Beta-2 Glycoprotein I, IgM:

The reference interval reflects a 3SD or 99th percentile interval, which is thought to represent a potentially clinically significant result in accordance with the International Consensus Statement on the classification criteria for definitive antiphospholipid syndrome (APS). J Thromb Haem2006;4:295-306.

Reference Range:

Negative: <33

DRVVT Confirm Seconds:

Testing Not Indicated

Not indicated

DRVVT Ratio:

Testing Not Indicated

Not indicated

DRVVT Screen Seconds:

Reference Range:

<= 47.0

Hexagonal Phospholipid Neutral:

Verified by repeat analysis.

This value is POSITIVE.

This is a qualitative assay and is therefore reported as positive for lupus anticoagulant or negative. Testing while the patient is on anticoagulant therapy, including heparin or dabigatran, may cause a false positive result. The quantitative value is provided as an aid in diagnosis. Reference Range:

0 - 11

LAC Interpretation:

The following interpretation for the presence of a lupus anticoagulant (LA) is not valid for patients receiving warfarin, direct Xa inhibitor (e.g., rivaroxaban, apixaban) or direct thrombin inhibitor (e.g., dabigatran) therapy. These drugs may cause false positive lupus anticoagulant (LA) results but will not interfere with aCL and B2GP1 antibody testing.

A lupus anticoagulant is detected. This interpretation is made based on ISTH guidelines for LA diagnosis (J Thromb Haemost. 2009; 7: 1737-40). As only persistent LA meet laboratory diagnostic criteria for antiphospholipid syndrome, repeat testing in 12 or more weeks is recommended, ideally in the absence of anticoagulant therapy. All ELISA-based antiphospholipid antibodies evaluated are normal. Please contact Esoterix Coagulation

if further clarification is needed.

Platelet Neutralization:

Reference Range:

0.0 - 3.0

This test was developed and its performance characteristics determined by LabCorp. It has not been cleared or approved by the Food and Drug Administration.

[falling2peices in reply to Lure2]

I tested for all 3 and then some but yes only the lupus anticoagulant was positive. I posted my results it looks very extensive

[falling2peices in reply to Lure2]

Is it not risky to not be properly anticoagulantes the 12 weeks in between I worry because I've gotten 2 of the (some refer to the Bruising as APS bruises ) but I don't know I just get a pain in my leg I looked down at my leg and watched a small bruise appear with out being injured and and I was a little worried between that and the livedo that's stayed pretty bad lately.

[Manofmendip]

Hi

As Mary has said I have personal knowledge on balance issues.

I was having, and still sometimes get, momentary incidents of feeling like I have been pushed, or turned, or the floor has bounced. I went to see Prof Hughes, who referred me to Peter Savundra, at the Portland Hospital, in London. Peter is a Consultant Audio Vestibular Physician and he explained to me that what I was experiencing was transient ischemia of the inner ear. He said that the blood vessels in the inner ear are only 0.1mm in diameter and that is smaller than some platelets. He said that in most people the platelets squash down and go through the blood vessel, without problems, but in APS our sludgy blood cannot do that and the 'funny turn' is the result. He said that the ischemia was a symptom of APS and not a new illness.

I asked him why I usually had other strange symptoms for several hours after one of these incidents - tingling, shaky legs, dull headache etc. - and he explained that the brain becomes confused by the inner ear issue and makes chemicals, inappropriately, which causes the other symptoms.

He told me that although unpleasant this issue and symptoms are not worrying or life threatening.

I hope this helps.

Dave

[falling2peices in reply to Manofmendip]

Thank you I will be sure to give some information on this and APS to my ent just in case.

[Manofmendip in reply to falling2peices]

Yes, ask him to refer you to an Consultant Audio Vestibular Physician, preferably one who is experienced in APS.

Dave

[falling2peices in reply to Manofmendip]

I will thank you so much for the advice

[Wittycjt in reply to falling2peices]

And good advice it is🙂

[Molly100 in reply to Manofmendip]

Oh goodness I also had 'funny turns' as I used to put it many years ago and was told it was a type of migrane! I kept falling to the ground but not exactly passing out. Then I was sent for the same test as falling2peices and was told I had an inner ear problem. I thought I had passed the test as I had not got dizzy and was rather pleased with myself! When actually I had failed it completely because I had not got dizzy! Anyway I still have balance problems if I close my eyes whilst standing up I would fall over. Also I am not great in the dark. Since I have been on Warfarin my syptoms have lessened with regards to the dizziness episodes and I do not pass out like I used to. But I never put it down to Hughes - now I know!

[Lure2 in reply to Molly100]

Hi Molly,

I wonder if you have an INR steady and high enough as you still have balance problems? What INR do you have and do you selftest so you know "where your are" as to the INR?

When we get older we need to exercise often and especially we can make our balance better that way.

Take good care of yourself!

Kerstin in Stockholm

[Molly100 in reply to Lure2]

Hi Kerstin

I am alot better now my INR is higher and never really get the balance problems like I used to. I have learned to live with the little problems I get. Like knowing that in the dark my balance is not great so I also hold onto someone. It is just interesting to read an identical account of what I have also suffered with. I never put it down to Hughes. It is also interesting to hear Daves account of it and the reasons behind the symptoms.

Sue

[Lure2 in reply to Molly100]

Hi Molly,

Yes, Dave and I had the same type of Specialist for it. My Specialist said I had micro-emboli and with Warfarin I was ok. So few understand that we need an INR of 4.0 to feel ok as we really have a very thick and sticky blood.

It is a trial and error and few have a Doctor who is willing to follow us on our journey. So sad!

Kerstin

[Lure2 in reply to falling2peices]

Hi falling2peices,

As you now have a diagnose of HS/APS and several other autoimmun illnesses diagnosed, you really need a Doctor who is specialized in these autoimmun illnesses and especially in our illness HS/APS of course.

We need two things when we have this illness: 1) a diagnose, 2) a Specialist of autoimmun illnesses who can treat you. Do you have vertigo and eye-issues also?

Kerstin

[falling2peices in reply to Lure2]

Hi kierstin no I'm not yet diagnosed with APS I take my 2nd test today it's the 12 th week today. Should I go today or wait until Monday I don't want to jump the gun and got to early I can go any day Monday thru Friday.

[Lure2 in reply to falling2peices]

Hi falling2peices,

Sorry that I gave you a diagnose too soon.

Wait till Monday as that will not do any harm I guess!

We will be waiting here for your answer.

Have a nice weekend all the same!

Kerstin

[falling2peices in reply to Lure2]

It's ok I can see how easy that is to think with all the things I have going on at once I do appreciate everyone who is sharing their personal experiences and knowledge. Honestly I don't expect the results to be negative on the second test and I'm ready to accept whatever the results are cause either way APS is part of my life wether because I have APS or because I'm going to share what APS is there's to many people doctors as well who have never heard of APS and that means there's to many who probably are going untreated undiagnosed and that's not good so either way I accept it.

[falling2peices in reply to Lure2]

Vertigo yes but it's due to having loss vestibular balance sensitivity in both ears so far visons ok 20/30

[falling2peices in reply to Lure2]

Yes to the vertigo I have bilateral vestibular loss almost if not complete loss

[Wittycjt in reply to falling2peices]

Anything new today? Besides your getting re-tested?

[falling2peices in reply to Wittycjt]

Not really it's just been raining so ofcourse i was freezing today which made my livedo reticulares worse. Oh and about to head to Walgreens and pick up some aspirin

[Wittycjt in reply to falling2peices]

Good for you!

[Wittycjt in reply to falling2peices]

Falling to peices (? Spelling)

Welcome, where are you from?

Good you're having this checked out and will be armed with the information to give the ENT. Best of wishes

[falling2peices in reply to Wittycjt]

Wittycjt lol are u seriously correcting my screen name lol that's awesome your the first one in 2 or 3 years to catch that. It should have said pieces but my spelling has diminished over the last year or so I forget words n have horrible spelling lol. I'm from Memphis tn in the us home of Elvis Presley.

[Wittycjt in reply to falling2peices]

I have similar issues..I thought you were new here and that you didn't realize it was incorrect and the machine you were using didn't catch it, lol. Most machines have auto correct now. Whatever glad your here! Do you have a specialist in Tenn for APS?

[Wittycjt in reply to Wittycjt]

I am confused though, I like Kirsten thought you were APS " verified" ha ha ha. (Because you're on this site) Change of words, instead of saying positive, as there isn't much "positive" about it. I see you are still awaiting your second trip testing results when are you suppose to have them? Are you at least able to take aspirin as an anti-platelet so it can assist you to not throw a clot? While you are waiting? Concerned for your safety, Cindy in NJ

Good luck😳

[falling2peices in reply to Wittycjt]

I will be taking my second test Monday morning and my doctor didn't give me any instructions she had never even heard of APS I asked her to test me after some members told me which tests to get I was told a few years ago that I had sticky blood and livedo reticulares and was on aspirin back then but no testing that I'm aware of. I have had multiple misscariages prior to 2005 all at about 9 weeks and was told it was blood clots in the umbilical cords I haven't had the asprain in a long time and didn't take any this whole 12 weeks

[Wittycjt in reply to falling2peices]

Any reason you can't take a baby aspirin now?

[falling2peices in reply to Wittycjt]

No I'm waiting to see a hematologist

[Wittycjt in reply to falling2peices]

So, no aspirin, not even a low dose aspirin?

[falling2peices in reply to Wittycjt]

I was going to start back on the low dosage I was on before I just wasn't sure if it would effect my second test for APS so I didn't take anything but I will since my test will be this morning yeah finally the long wait has arrived but now to be on edge until results come in.

[falling2peices]

You?