Confusion, Fog

[LesJames]

Hi, I have Hughes and like many also suffer from confusion and a foggy brain. I sometimes get my words mixed up and tend to make no sense. My question is, do any of you when getting your words mixed up mix them with the exact opposite. eg Saying dog and meant cat etc.

[daisyd]

Yes I know what I want to say but the wrong word comes out, I know when I have said it most of the times afterwards, what fun we have

[Lure2]

Hi Lesjames,

That is one of the most usual symptoms of our illness. Difficult with "word-finding" and mix up things.

It will definitely get better when we keep a steady and rather high iNR (if you use Warfarin). We have too thick blood that needs to be thinned!

Depends on each individual but usually we need an INR over 3.5 or around 4.0 or just a little more to feel rather fine. We do not bleed from this illness but clot.

[LesJames in reply to Lure2]

Hi Lure2, I do have a higher INR, mine is between 3.5 -4.0. I find if I go any higher I bleed into my limbs. I am just curious as to why when I get my words wrong they are the exact opposite.

Thank you

[Lure2 in reply to LesJames]

I have noticed that myself a couple of times. The most difficult thing is to find the correct words especially if you are stressed.

How often do you test your INR? Our INR can be very erratic. If we do not test it often we do not know that it might be low one day. Our symptoms will show more likely when we have too thick blood.

[Zamalek in reply to Lure2]

Hello Lure and re Brain Fog and keeping a high INR. Surely although we unfortunately will clot, we also run the risk of bleeding and this risk is with us always, alongside the risk of

clotting. I feel fabulous with an INR of 5.00 !! but I know 5 people, all have had serious bleeds. 3 were on Warfarin, one of these bled into the brain and now can no longer walk.The other two bled internally. We are not immune to bleeds.

[Lure2 in reply to Zamalek]

You say you know 5 persons all had bleeds and 3 of them were on Warfarin.

Did those 3 persons also have Antiphospholipidsyndrome?

Actually it is prof Hughes who has said it ("You do not bleed from APS but clot") as usually Doctors who are not knowleadable of our illness do not know that we have too thick and sticky blood which needs a stable and and INR high enough. That is why we need to test our blood often to know when we are too low.

I have been on this site for at least 7 years now (live in Stockholm) but I must say that very very seldom I have heard from someone with APS who has had a bleed from a too high INR. Of course we need a Specialist in charge of our anticoagulation.

I wonder what your therapeutic INR-level ordered by your Specialist is and if your INR of 5.0 is in the vein or in the finger? That can differ quite a bit for some of us.

As I test at home rather often I know when my INR is too low or too high. My therapeutic level is an INR between 3.5 - 4.0 but we try to keep it around 4.0.

[Zamalek in reply to Lure2]

Thank you for reply, I have to keep an INR between 3 - 4. I know these bleeds occurred in people without APS, however I am aware that with age the flexibility

of our blood vessels etc is not so good, also I was told by a Doctor that the thinner the blood is the more liklihood of a bleed there is.

[Lure2 in reply to Zamalek]

I am 75 next month. How old are you? Still we need a rather high INR as we have this illness (I have just tried to explain that to you). The problem for us is usually the Doctors who do not understand this and therefor we need a Specialist who let us selftest if possible.

An INR of 5.0 is too high (I do not know if you are over 75 years of age) and I can understand if the Doctor is worried. My Hematologist Specialist is afraid that I will go over 4.0 and therefor she lets me selftest. Therefor you should selftest often and keep control of your anticoagulation.

Try to get a Specialist who will understand this as you are not Lupus Anticoagulation-positive and therefor it should not be a big problem at all.

[Lure2 in reply to Lure2]

I reread a bit and found that you are triplepositive incl Lupus Anticoagulant. Also you write that you have had two clots in one eye and often been under an INR of 3.5. Yes I think you feel bad as you are too low in INR. Perhaps your vein-value is lower than the fingerprick-value. The vein-value is allways the correct value! Do some parallelltesting within a couple of hours.

What happened when you had a clot in the eye? Did you have Amaurosis Fugax?

You now say that those 5 people who had a bleed did not have APS. Well I thought so.

My hematologist knows that elder people are more at a risque for a bleed but they usually do not have APS. All the same I have a greater risque to get strokes, heart-issues and embolie from a too low INR.

We need a Specialist of autoimmun illnesses (you also have Sjögrens?) and a steady anticoagulation at a rather high INR. Try to fix that.

[HollyHeski Administrator]

Hi, yes I do, hadn't thought about it until you said, but do say opposite, as well as muddle up, as well as have difficulty in saying some words.

For me its usually when very tired, I drag my left leg too, so always related it to my strokes.

[KellyInTexas Administrator]

Oh, yes! I have this exact problem. It’s eerily specific, this kind of mistake, isn’t it?

Always worse when I’m tired.

[Lure2]

Interesting! I will read it slowly.

Interesting about singing as I have just been on a perfomance with a choir. Those wellknown songs are not difficult to remember the words, but new ones are quite hopeless if you must not use any papers when singing and try to remember the new words.

[silemoran]

Join the club its one of the symptoms.

[Fra22-57]

I cant even remember something told minute ago at times.I have shingles at moment and had to wait for husband to come back with my cuppa to ask him what it was.All I could think was spangles and sprinkles.I do think they sound and look better thou

[WendyWoo50]

I often get my words wrong and my family guess what I mean like for example:

Can you get the cabbage from the dishwasher may mean can you get the washing from the line.

So mine are totally random.