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Sticky Blood-Hughes Syndrome Support
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Severe memory issues/brain fog?

Does anyone have severe memory issues and/or brain fog? I have brain fog regularly (during regular flares and especially during major fares). Sometimes it's big like not recognizing the turn for my street two blocks away from our house and other times it's replacing a word (or letters) in a word with another (For example, "Nice to foot you" instead of "Nice to meet you".) Lately, it's been that I have to really watch calling my husband of many years by my x-husbands first name. It's horrible. I hate when it happens. I know who I'm talking to or referring to at the time and yet out pops the other name. I know this can be a sign of Alzheimer's later in life, but I'm 46 so it's not that.

In the last week, instead of typing in the password for my computer that I have used for the last 4 years I have been typing in the password that I used 10 years ago. I had forgotten all about this password and the dozen of others I have used to log into a computer over the years. That was until I went to type in my password last week and then when it didn't work, I realized I had typed in this old forgotten password. Since then it's happened a dozen times where I typed in this old password.

These things are happening when my mind is on auto-drive -- that is when I have done something a zillion times before and I don't need to think about it, it just happens (like saying your husbands name or typing in the password you use).

Has anyone else had these things happen. Being 46 years old and our youngest child being 5, I have to keep my wits. Any ideas on what to do?

In the past, I have had trouble accessing item (such as my pin number or a name). But with this replacement with items from years earlier, that is different.


21 Replies

Hi there,

I recognize what you describe. I have APS. It sounds as if you could have it also. Have you met an APS-doctor now or have you got your diagnose yet?

Take care!

Best wishes from Kerstin in Stockholm



Do you have a diagnosis of APS/Hughes Syndrome?

If so:

who is managing your illness; and

what medication are you on?

The symptoms that you describe are common in APS patients.



I am still in Limboland. I e-mailed with Dr. Hughes and he put me in touch with a doctor who worked with him and is now starting up a practice in the U.S. She is not yet seeing clients as she wants to get the academic hat squared away before she sees patients. She agrees with doctor Hughes on seronegative APS and she believes a trial of anti-coagulants would be in order for me. I can't wait for her practice to open, but I realize everything she is doing is very important. :-) I can't wait until I can post her info -- that is when she is open to new clients.

I met with excellent APS doctors in New York. I highly recommend them for those who have high APS antibodies. I do not have high APS antbodies. Doctors in the United States are worried about risks of bleeding on anticoagulants. That's completely understandable. But when one has 3 decades of debilitating symptoms and every doctor agrees that there is a clotting disorder and an autoimmune piece, and there were full symptoms of pulmonary embolism with coughing up blood where there is now scar tissue before the known clotting disorder, then doesn't a trial of anticoagulants make sense. For example, one doctor said it's a 30% chance that my symptoms before were of a pulmonary embolism (with the scar tissue and small collapse in that portion of the lung). That with my Factor V Leiden + FV R2 makes me more highly likely to have another pulmonary embolism. With the high fatality rate for pulmonary embolsim, plus my MS and Lupus symptoms, migraines, debilitating fatigue, neurologic symptoms etc -- with these, my husband and I just don't see the risk of bleeding as being as risky as continuing from being pushed from doctor to doctor with them saying "I'm sorry, but I can't help you".

It's exhausting. Every doctor agrees that I have the brain lesions, the neurologic syptoms, that I am hypercoaguable (high prothrombin fragment 1+2 always), and high d-dimers when I go into the hospital feeling things pass through my heart (or the left of neck hurts as if a blockage). They agree that I have the sight (eye) issues that come and go, etc... that are related, but right now they say aspirin. For 3 decades it's been aspirin. I look forward to the new doctor opening her doors and flying in to meet her.

Next week I see a new rheumatologist. So far, I've been diagnosed as M.S., probable M.S., not M.S. (but something autoimmune agreed), then maybe Lupus. Ughhhhh. I've had the speech a dozen times from doctors that 100 years from now they'll probably be able to diagnose whatever it is that I have so much faster. That's great for my offspring. But what about me??? It would be nice if someone took a chance on me and worked with me. (Sorry I am in a very "Me" moment. My inner child is wanting to be adressed. :-)

The neurologists say that they think many of my symptoms are more likely autoimmune and therefore want the autoimmune docs to figure it out before they treat me. The autoimmune docs think many of my symptoms could be from my clotting disorder and they want the hematologists to figure it out. I get pushed around and around and around and all I get is aspirins.

For example, the neurologist says the lesions in my white matter and memory issues could be TIA's from clotting disorder. The hematologists say to see the neurologists for the lesions and memory. The rheumatolgist says to see the neurologist first. And around and around and around it goes. While I "yell" please give me a chance --- somebody work with me and try. And our children are constantly reminding me "but mommy, you are always sick."

I'm tired of getting sick in the heat, I'm tired of having to lay down everyday, I'm tired of people not understanding why the house is always messy, I'm tired of days of having to put on makeup thicker to hids the butterfly rash, I'm tired of not always being mentally available to my kids when completely exhausted and then feeling guilty, I'm tired of having foot drop come out of nowhere and looking like a clutz, I'm tired of being mid conversation and sounding like a fool because I'l start to slur my words or mix up my words into non-sense, I'm tired of pretending to be well, I'm tired of not being able to pull my share of working outside the home. I'm just tired today. Not Tranquil at the moment. Yet, I know tomorrow will arrive and hope will be back in my heart and that hope will be enough to fill me with tranquility for the day.

Sorry for the inner child tantrum. I appreciate this community. You are all so very wonderful and supportive. I am so glad you are here!

1 like

OH. You have been in contact with Professor Hughes. He has given you a name. Soon now you will have an answer. That is fantastic.

Is it wise to see a new doctor (Rheumatologist) when you wait for the APS-Specialist that professor Hughes has suggested?

I think you will feel better when you get a proper anticoagulation.

Good luck from Kerstin


Well, you know I understand what you are going through. I just went to the memory center near the place we both went to. They are acknowledging that my titers could be a low positive and that I have memory problems and that APS could be causing it, but like you--blood thinners--too dangerous. If you can fly to the doctor suggested in London, could you fly TO London? I guess you would also have to find a doctor here who would take the suggestions of the doctors in London. Meanwhile we have to just stay in a state that is totally not OK with us, but too scary for doctors here to give us the heperin trial that Doctor Hughes suggests. So terribly frustrating and discouraging. Are you taking plaquenil? I'm beginning to think my mind is clearing up a bit from the plaquenil. It has taken 9 months for me to think there may be a difference. I do have a lot of symptoms that are lupus-like and have be treated successfully with plaquenil in the past. With possible connective tissue disorder they don't mind so much trying to treat it to see what will work.

Good luck and let me know how you are progressing.


Hi Ann! No plaquenil yet. Yes, just trying would be a step in the right direction.

For me, the cost of flying overseas is prohibitive, while a two hour flight is doable here in the states. Also, I'm not sure U.S. pharmacies would recognize an overseas prescription. I hope you are feeling better.


Can you tell me what state she is in, so perhaps I can dream of going there and getting help when she opens her practice?


Sure will. I'll send it in a private message.


Tranquility1 - What you wrote can be related by so many of us including myself and I am so grateful that I live in the UK and have access to Prof Hughes. Like you I had that merry go round until him! Unfortunately for you and your litigious medical system, everyone is so scared of doing something that they will get into trouble for so they just pass the buck. God knows why they became Dr's as the hypocratic oath they took means nothing to them!

I do hope that your new Dr opens up soon and you can hang on a bit longer. Have you tried the "I hold you responsible for whatever happens to me" line with all these other Dr's in the meantime? If they knew that by refusing you a Heparin trial meant that if you Stroked or worse still died whilst under their care and you had either written that to them or told them that firmly, they may be more likely to take the risk. They have to weigh up what they are more likely going to get, but it seems to me they would then be dammed if they do and dammed if they don't!


Well said APsnotFab!



Thanks APsnotFab!

I am going to try the ""I hold you responsible for whatever happens to me" line. Thank you for the great idea.

I am going to write a letter today to my doctor that contains all the research and links. At this latest appointment, the doctor spoke of risks, but I can't find the one's the doctor rattled off anywhere. Maybe by putting the actual figures and studies in front of the doctor along with my statement that I believe it's worth the risk and also what the risk of actual people that have major bleeding incidents, -- maybe then the doctor will see the light.


As Above play the Doctors at their own game, I would if it were me take a copy of professor Hughes work re diagnosis and treatment and make sure they write in your note that you have requested to be treated like he suggests.

As for your symptoms I know exactly how you feel I haven't called my husband by a different name yet but my daughter tells her new partners they could be called by her previous partner name,

i use to forget things overnight, important things.

I have greatly improve on Warfarin and before that .

Placqunil has help my balance, I can't remember when I last dropped anything.

I also had severe clinical depression, hardly surprising when thinking I was going mad! Antidepressants have really helped with that.

I hope you manage to get the Doctors to listen to you.

Try and drink lots of water, I think it helps.


Thanks DaisyD!

I hadn't even thought of the bonus of not being dizzy. I have felt dizzy for as long as I can remember. Walking in a store, I prefer to use the cart because it stabilizes me. When the kids were in strollers, I was the one who wanted to push the stroller because it stabilized me. People don't realize how much energy and thought goes into staying vertical when one is dizzy much of the time.

Water - great idea. I'll go get a glass now and I'll also write a reminder for later. :-)


constantly using wrong words (worse when tired) and forever forgetting to get off of trams,trains buses at my stop and ending up who knows where :/

Often attend appts. on the wrong day too, oh, and leaving cardigans over the back of chairs in restaurants,paying for shopping and leaving it behind,leaving my purse in public loos,,think I ought not to be let out alone lol


Hi there. I have APS and am going through this at the moment. I am best with an INR of 3.4, but this week it has gone to 2.6. Doesn't sound much, but I feel like a totally different person, living in a dream world. Sometimes it's as though I've gone backwards in age, and I forget about the now, and revert to thinking of things in the past, also like you, I keep putting the wrong words into sentences, and sound like someone that has had one to many to drink. I've also got a burning sensation on the inside of my right foot. This is something else I get with low INR.

Please be assured that your not the only one going through this, there are many of us out here fighting our own daily battles. I find it best to have note pads round the house, so if I need to make a note, I can do it there and then (especially shopping lists and jobs I need to do)! I'm 37 and find it hard to get people to understand what's happening to me, as it's not something you can see. I've just ordered the books 'Sticky Blood Explained' and 'More Sticky Blood', both books by Kay Thackrey. I'm hoping by letting others read them, they can get a better understanding of the condition.

I hope you find something that works for you soon! At least you know there are others here willing to support you x x x


Sal0712! What a great idea letting others read the books on APS! Everyone here is so helpful.


Hi I am 70 and have APS. I feel a lot better after warfarin. It has helped a lot. I have also found that I do not care for things i used to do. . I have not the strength to worry like I did before. So I drop it. It is not in my mind anymore. It is like I have forgotten about it. Have I .....?

I have 5 pencils on different places in my apartment and a paper also. I have to write Everything down. I do it on purpose also because who knows when I really forget totally. Hope that i by doing lots of things can improve my memory. It is quite OK mostly with help of my notes that I take with me.

When I am stressed I forget words more often and when I think about how bad I manage and what will they think of me, it is even worse. It is painful.



Hi Kerstin! I am with you worrying what people will think of me when I mix up my words, have memory problems, etc.... Being with people who don't know about my health and having words come out that don't make sense is so difficult. I generally just stop talking. I know at those times that if I try to explain it, more mixed up words will come out and my processing will be off at the time and any explanation will be poor. Once it happens, it seems to continue for a period of time.


Hi Tranquility1,

Yes, exactly like that. Thank you for sharing with me!

Best wishes from Kerstin


Hi Tranquility 1. Yes, another here who recognises many of your symptoms- and they are down to Hughes not Alzheimers. I am now an O.A.P. and can laugh my memory lapses off most of the time but I do indeed remember when I had my first severe bout of PEs, forty odd years ago , which left me with half a lung working for a while and a dreadful memory after the physical recovery. It was wanting to understand more that led me to do a psychcology degree, though I've gone on to forget much of what I learned doing it! I still forget my kid's names, struggle for certain words and most oddy frequently start typing a word with the second letter! I know that TIAs have also done some damage. But the good news is that you develope coping strategies. I do agree that having the right target INR can make a big difference. For example, I write down what I want from my doctors, and what I want to tell them rather than try and wing it at the time of appointment.

As for brain fog, yes, that too. I used to hold a postion of considerable responsibility in one of the emergency services and would occasionally have to manage responses to a number of serious incidents going on at the same time. Years after I finished that job I remember one day not being able to work out how to get to London. My INR is now more appropriate and I don't have the problems to the same degree.

As for passwords- where to start? I tend to have one that is so obscure I am very confident that nobody would figure it out, and I use it on multiple accounts- and it is written down somewhere, I'll not say where, in a disguised form that has always triggered recall of the full password. Others that I use are also written down somewhere, but time and time again I dont have ready access to the record when I've forgotten the word, I'm away from where it is stored.

So far I haven't called my wife by an old girlfriend's name, probably because most of the time I have forgotten them- or maybe my unconscious knows what might happen and comes to my aid.

Finally, I have explained my problems to one or two people who might have cause to wonder why I might act, or not, in a particular way, so that it makes management of certain things easier, but I don't like to share too much - nor should we need to. I recommend joining a Hughes patients group if you can, in Bath in UK we don't need to explain to one another why we may be struggling .

Best wishes


PS> I usually write things out and revise them at least two or three time- and still make mistakes- anyone else?


Thanks Tim! Very helpful.


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