Loss of words

[DaCoach]

I have been noticing lately that I can't remember. I am 49 years old. When talking to people, l forget or the words don't come out. I stumble on words and speak with broken words. I have no physical deficits. I was wondering if this could be related to APS. Anyone experiencing the same?

[Manofmendip]

Hi there.

Yes, I used to get this, when I was on Warfarin, and my INR level was too low. It is common in APS patients.

Dave

[DaCoach in reply to Manofmendip]

Thanks Dave

[MaryF Administrator]

Hi, yes this does happen to people, including myself! Mary F.

[DaCoach in reply to MaryF]

Thanks Mary

[amy1808]

Yeah , mine comes and goes usually when INR low , really bad yesterday .

I have started doing puzzles and on line scrabble to get the grey matter working x

[DaCoach in reply to amy1808]

Thanks Amy

[Wittycjt in reply to amy1808]

Good idea😌Amy 1808

[DaCoach]

It was just low. Upping my dose of Warfarin.

[DaCoach]

Thanks APSnotFab

[Lure2]

Yes it has happens to me with my neurological symptoms that I have. If my INR is just a little bit low (under an INR of 3.5) I have difficulties to remember and say the wrong word for things etc etc.

Try to get a higher INR if you stick to Warfarin. I have today a therapeutic level between an INR of 3.5 to 4.0. That should be my INR in the vein at the hospitallab.

I selftest almost every second day at home. At home on the CoaguChek machine XS I am near 5.0 when I am without symptoms. For me it is a difference between the two testings. We made double-testings for a long time before I could start selftesting on my own. Always the same difference between the two which is important.

Best wishes from Kerstin in Stockholm

[DaCoach in reply to Lure2]

My INR was low this week. It makes sense now.

[SoulRebel-APS]

I think you wil find most of us have that priblem some just sometime, others-like me- most of the time. The work is there u just can't get it out. Hope you feel better knowing its very common in APS patients.

[DaCoach in reply to SoulRebel-APS]

Knowing it is probably because of my INR was low helps. Maybe it's time to talk to Dr. About home testing.

[amy1808 in reply to DaCoach]

Best thing I ever done . I send my reading in twice a week and they email me back with altered warfarin

[DaCoach in reply to amy1808]

I think this is a good option.

[Sara_A]

Yes definitely get this. I've recently started to tell some of my closer friends why this happens cos I felt embarrassed about it and this has made it much easier for me. Especially as it makes it worse if u are worried what people are thinking.

I'm 37 and have had this since all my problems started at around age 21 it did improve when I started aspirin but recently become worse again so have been changed to clopidogrel.

Also waiting for an mri just to check all ok as worse at the mo.

[DaCoach in reply to Sara_A]

I only take Warfarin, maybe need to take an additional med to help my INR.

[Puska]

Yes. I thought I was developing Alzheimer's. There is no history of it in my family. I am on Xarelto but have yet to see rheumatologist after my blood tests confirmed APS (LAC) but as my mum was on warfarin and passed away from either stroke / brain bleed I will try stick with X. We shall see next month.

[Groovy]

Yes I get it. I usually know what to say but it either comes out slow or I can't think of the word to use. It's annoying!

[SoulRebel-APS]

Home monitoring sounds good but keep in mind, that for many APS patients like myself, the alere home testing is not accurate and can give u false results. If you do get one be sure to go the the lab once in a while, or anytime ur home inr reading does not match ur symptoms. Because depending on what clotting factors are present at the time of testing can through the machines readings off. Usually giving you a false high. However, many patients do not have that issue. Just remember to test at lab thru blood draw and compare readings so you know who the home monitoring is working on you. Gool luck!

Steph

[Lure2]

Hi Steph,

As I remember you and I have all the three antibodies positive and are also selftesting, You are aware of the problem with different readings for vein-draws and fingerprick-draws.

I wonder if you have got a Doctor who helps you to get your INR up to over an INR of 3.5 as we probably both need that high INR to get symptomless. I wonder how often you can take a test at home with your machine?

I wish very much that you do not need to get "strokes" or TIAs any more. We need a Doctor who understands that we are not "ordinary" Warfarin-users To get anticoagulated is the main issues for us.

Kerstin

[snorkle272 in reply to Lure2]

Kerstin could you please tell me the names of the three antibodies involved with your APAS? I have three factors as well but as I am going to get my doctor to retest, I need to know what to test for. Because I cannot remember all of them. Thanks

[Lure2 in reply to snorkle272]

The three are:

Cardiolipin,

beta-2-glycoprotein 1,

Lupus Anticoagulant

Good Luck!

Kerstin

[Dot69]

this can happen to me, more often when I've been talking a lot, as I found I have to be more deliberate on words, so slower. I'm better not talking!!! Try not to worry

[debatwistow]

Hi, Yes this happens to me all the time. My INR is pretty stable though. I find I can't get the right words out and have to describe an object if I can't remember what it's called. I have sagital sinus thrombosis because of my APS. I put this problem down to cognitive deficit.

[ledlegs]

Yes I get this all the time now (I am 59) Never used to but now it happens frequently. In fact as I get older all the symptoms seem to have got worse.

[DaCoach in reply to ledlegs]

It can be frustrating at times.

[snorkle272]

Yes this happens to me as well. But I have 2 strikes against me. I have some brochia's aphasia from the strokes I had before turning 48. But it is also a routine problem, specially when I am tired. Of course that is also when I have brain fog goin on as well. Speaking slowly does help. And I am looking at increasing my INR to help. Good luck and please let us know what happens.