If this were meteorological fog I would now be a severe weather warning
But joking apart, it is now becoming a bit scary. Other people are noticing which is embarrassing.
We were talking about siblings with friends on Saturday and I said my husband is a twin. "No I'm not but my brother and sister are, " he said gently. But I felt adamant that he was ?? But I said nothing and then remembered!
I am told important things - like a much loved friend has cancer - terrible - and then I forget and see her and she tells me and I am shocked only to be reminded by someone when I get home that I had been told.
I am in a permanent state of muddle and memory loss.
Friends say, "Oh yes I'm just like that!" But this isn't going upstairs and forgetting what you went up for. This feels more sinister; holidays forgotten, route to Sainsbury's (other supermarkets are available - lol) forgotten. I even had to think what my middle name is when I was filling out a form.
I say stupid things like "Do you want that stuff beginning with t (tartare sauce)?" when I was cooking fish. Or I ask for "the round thing you put into the machine for music" (CD).
Such "fogginess" is bewildering; it's like having the rug pulled from under you - totally disorientating.
Please tell me you know what I mean.
I was almost pleased to be told it was APS because I thought I had early dementia.
People are beginning to laugh at my dottiness. I laugh too - but I'm not really laughing inside
Lynn.x.
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Hi there, I shall ask all the usual questions, are you on Plaquenil for the fatigue, how is your INR? and have you had your thyroid checked, all these things can contribute to making things worse, also make sure you GP or whoever you trust the most does a panel of blood tests for things like vitamin D levels, b and iron, these are individual things, but added up together can all contribute to making things worse. I must say I go through phases of being more clear headed only for it to come back again, any virus or infection makes me much worse as does any hormonal involvement. Please keep your sense of humour, it is vital! MaryF x
Hi Mary - no not on plaqenil - though St T's advised it but local rheumy not sure - will chase this. Thyroid ok. Not sure about Vit D but have just been diagnosed with pernicious anaemia so on B12 jabs. My neuro, hematologist and St T's wanted me to stop warfarin but my rheumy advised against stopping - thank goodness but he is trying to bring my INR down to a therapeutic range - below 2:5 I am worse - am now at 3. Target is 3.
Hi fight to keep you INR and also push for Plaquenil, it takes a while to work but would help with fatigue if it suited you....make sure they give you exactly that brand and not another....Glad to hear they are checking levels of other things, this will certainly be contributing to how you currently feel. MaryF x
Most members on here say the same thing for similar reasons, so not an unfamiliar path to follow, I am sure others will talk more about their experiences with this. MaryF
I had memory fog like you have now before I started warfarin. How long have you been on warfarin? Most of us need a STEADY INR over 3.0 to feel better. See to it that the clinic tests your INR at least once a week especially the first two months or so. Make notes what you eat of vit D vegetables and buy a dozette-box (not sure what it is called in English) for the daily tablets so you know you have taken them every day.
Jag hade en fantastisk tid, tyvärr innan jag lämnade jag hade haft en njurinfektion och tidigare en infektion innan dess, även tre allergiska reaktioner mot antibiotika. Jag lyckades bara en resa på skidorna, som jag fick då svag med viral bronkit. Men jag är nu på bättringsvägen och försöker göra daglig motion igen. Jag hoppas att gå igen, jag älskar att vara i fjällen. Jag gjorde massor av skrivande och barnen haft en utomhuspool. Jag testade också snarare en massa trevliga polska drycker för forskningsändamål! Hoppas du har det bra
I had a fabulous time, unfortunately before I left I had had a kidney infection and previously an infection before that, also three allergic reactions to antibiotics. I only managed one trip on the skis, as I then got weak with viral bronchitis. However I am now on the mend and trying to do daily exercise again. I hope to go again, I love being in the mountains. I did lots of writing and the children enjoyed an open air swimming pool. I also tested rather a lot of nice Polish drinks for research purposes! Hope you are well. MaryF x
I know exactly how you feel, I frequently just cannot find the right word for something eventhough it's something I use everyday. It takes me ages to fish around my brain and then finally resort to using a description instead. My family laugh but it's really worrying when there is nothing in your head no matter how hard you try.
This all sounds so familiar.........I just lose words or names. I can even picture what or whom I am trying to name but just cannot for the life of me remember the word or name. It's getting to the stage where it is embarrassing and it drives me absolutely nuts.
Hi - yes I can often picture the thing I am trying to name and sometimes I can even picture the word itself as if it is written in front of me - but I can't actually say it. I had months of speech therapy and was told to describe what I wanted to say. But I don't seem to have moved on from that!
Yep -- I quite regularly get a picture in my mind of an object or someone's face and don't have a clue, no matter how much I rack my brains... but it is funny when the word or person's name jumps out of the blue hours, or even days later. Being 59, I keep telling myself "This is APS-- not Alzheimers" (that both my parents had.) Please, please, let it be just good ol' APS brain fog!
When I was having stroke rehab I had a few sessions with an OT and laughingly said - "What will I be like as I get older and even more forgetful?" She said, "Oh you'll be fine - you will have tons of strategies in by then - you'll be better than the rest of us!"
words! I feel like there is a little unorganized secretary inside my head looking frantically through a filing cabinet for the word that is in the middle of my sentence,only she cant find it, and just like the previous poster, I see a picture of the thing but cannot think what it is called and sometimes plump for a similar word or description,yes it is embarrassing.
My teenage son is pretty good at knowing what mother is trying to say and will translate for me lol.
I once asked him if the purple was still working and he knew that I meant " does your pe top still fit"! (it is purple)
It was me that started that other thread,having gone to the lupus unit one month early.
I have previously been told by Proff D, Cruz that there is no evidence to support the fact that plaquenil helps with fatigue, but had my speech all worked out that day, was going to ask if I could give it a try and had formed some notes using info sent to me by Apsnotfab (thank you)
I do hope I am feeling as brave when I attend on the correct day!
Currently I only take aspirin for my APS, I have other meds for other things and have those trays, they are called dosset boxes or nomads
Hi I had to read your post to my husband, this is exactly what I get - I would argue with him until I am blue in the face because in my mind I am right and then it dawns on me that I am not, bless him he does not say anything just waits until my lights come back on!! It must be so frustrating for him and as you say you laugh at yourself but inside it is agony! I too thought I had dementia before I was diagnosed with APS and my doctor sent me for tests at the mental health clinic. They were lovely and I passed so know that I do not have dementia I have also had a brain scan and it was totally clear no damage (done at London Bridge hos) at all. I find that if I don't have too much stress or too many things to think of then I am a little better. I only work two days now which helps. And I find that if my INR is ok then everything is better. You almost want to have a sign saying 'I have APS and so say weird things sometimes'! My husband tells me to put things back in a safe place so I know where to find them, I tried this but could never remember where my safe place was!! Sue.
I am very very strict with myself about where I put things - a place for everything and everything in it's place - lol - to the point of being a bit OTT with tidiness. But this way I can function - you know get ready to go out and be out on time because I am not searching for my keys etc!!
I so empathise about the argue til blue in the face bit - my husband is very patient with me - I have started not putting my point of view across because I am invariably not right - I wait a bit first before saying anything. My husband gets concerned that I am losing my confidence though.
Hi there. The brain deterioration is very distressing isn't it, and of course no-one who hasn't got Hughes can really imagine how it is. I have been diagnosed with mild
cognitive impairment( brain fog) just doesn't describe it. I have unfortunately been
diagnosed with small vessel disease, which can of course lead onto vascular dementia,
and I cannot get an affirmative reply as to whether the APS has caused this. I like you was quite
relieved when Hughes was diagnosed, thinking at last treatment and I may now improve.
I believe there must be many patients out there with both s.v.d. and Hughes/APS.
Unfortunately my Consultant reduced my INR to 2-3, previously 3-4 by
Prof.K. at London Bridge, I have had severe head aches and confusion, however at
this moment in time my INR rose to 4.2, but this has been accompanied by balance
problems dizziness, feeling sick and some sort of pressure in the ears; so I am
even more confused. My G.P. tells me that anyone can get s.v.d., but I believe it is
caused by lack of oxygen to the brain ( undiagnosed Hughes for 20 years). When the
brain is playing up my legs feel weak also. I eat a lot of Salmon, thinking this will
help me, and try and do some of the cognitive puzzles in the paper. However it does
all fluctuate, and I just fake it on other days.Best wishes
I read much of your comment thinking "oh that's me!" especially the issues with warfarin dose changes & how that has made you feel and the long time I went undiagnosed which is when, I think, much of the damage was done.
Zamalek, you are right, the white matter changes (svid) are well described in APS by Prof Hughes and K and are felt most likely to represent as you say mini mini strokes or not enough blood flow/oxygen to the brain and in Prof K's book he advises anticoagulation to an INR above 3 in this setting. I had trouble thinking and severe headaches, but have none on lovenox and brand plavix. Warfarin simply did not work well for me at any INR, aspirin did nothing, but the current combo is 100% effective. Can you go back to Prof K and see if he can help you get on a more effective regimen?
Thank you Sally for your helpful reply. I am seriously thinking of returning to Prof. K. , but having returned to the NHS twice, I am
uncertain about the ongoing financial commitment by returning to
London Bridge. Also I must admit to feeling more nervous about
higher INR values, so dont know which way to jump.What is Lovenox?, my medication routine is at present 75mgs. thyroxine,
Quinoric 200 mgs 200mg simvastatin (which I think makes my heart race at night, and of course the warfarin, but only to achieve 2-3 INR, as the NHS Consultant said higher than this was too dangerous, and i may bleed!! Best wishes.
Lovenox is heparin. I think you have clexane in the UK. The risk of clotting in APS is much greater than the risk of bleeding and I know that Prof H feels many APS patients are undertreated due to MD concerns about bleeding risk when they should be more concerned about clotting. I must say that I feel much safer taking heparin, the dose is always the same, and of course it is much more effective for me. I know that is true for others as well, but some have better results with warfarin. For me, I needed the combo of the blood thinner AND an antiplatelet agent to get control of my symptoms, you may need that also because the nature of your symptoms are arterial not venous and the platelets play a key role in sludging or clotting in the arteries (but not veins). I went to London Bridge to see Prof Hughes from the US, worth every penny to have the correct information properly documented. Plus he helped me realize that I was getting worse when I was changed to generic clopidogrel from the brand plavix (another anti-platelet agent similar to but acts differently on the platelet from aspirin), which I never would have figured out. As I said, I had very severe symptoms, wasn't able to work, and now I NEVER have migraine, trouble thinking, word finding difficulty, etc. It took time and trial and error to work out the proper regimen (I need a higher heparin dose than is usually prescribed), but whatever it costs to find someone to get you there I think is money well spent. Prof H and K are the best. Hopefully you don't need to follow with them on a regular basis, once you get the proper regimen worked out, you should be good to follow within the NHS.
I must admit that I have difficulties to find the wright word nowadays also. The warfarin took not away all things but the worst things like that I suddenly could not remember if my parents were dead and at the same time I knew how long time I was like that. It took 1 hour. Like if I was in two demensions. Frightening. Another time I did not know if I had children (I have two) and what their profession was. That took half an hour and I realized that I must be ill. I phoned a friend but she did not notice anything but I did not tell her how I felt until afterwards.
If I am tired och stressed it is worse. How can other people understand. Impossible. I have been tested for dementia.
Thanks for saying this Kerstin. I was tested by a neuropsychologist. He asked how long I had been married, I could not remember. He asked what year I was married, I could not remember. He asked the month of my anniversary - nothing couldn't remember. I said that this upset me because I cherish my marriage. My husband was very kind and just said, "Never mind darling, at least you remembered that you are actually married!"
Your husband sounds very nice. I am divorced since several years. I have also been tested by a neuropsychologist and a doctor in Neuropsycology.
I have noticed that it is difficult to write by hand (I am lefthanded) but I have no difficulty to write on a computer with a keyboard. I can even write and remember English that I learnt in school. I am soon 70.
I do not think that my two girls (aged 37 and 39) really understand this illness. Now I have two doctors that understand APS at last.
"Like I was in 2 dimensions" is exactly how I felt when I woke up from the seisures I once had. (I had had minor surgery on the knee and the doc --- who is acknowledged as a brillian surgeon who is also a jerk -- pulled the shunt out of my knee without numbing it up or even warning me he was going to do it.) I too have had brain fog, but I must admdit, not quite as bad as several people have described. But it all makes sense given that Dr. Hughes' discovery of our little malady came from (administrators! Correct me if my memory is wrong here -- wouldn't that be ironic? or appropriate? given this thread?) trying to find the root cause of "Jamaican something-or-other" which caused the patients to walk with a peculiar gait and have mental lapses.
I'm so glad this forum is here and we can support and relate to each other. That has made such a positive difference in my life! Thank you all.
As I am a Yank and do not pay a VAT tax to support this site, I"ll have you all know that when I was hiking the West Highland Way some years ago tried to "pay back" by picking up every single bit of trash I found on the traiil -- which was not much. Here in the States it would have been a bag an hour, but in Scotland it was more like a bag a day.
Again, thank you all! And though I may not have any information to contribute I hope my words of sympathy and agreement help.
I notice that this site it most important to me so I do not loose my confidence in myself. I am also thankful to all here when I hear that they can understand me even if I am from Sweden.
We learn so much from eachother. Kerstin
I experienced "brain fog" until I began treatment for APS (Aspirin 320mg and Plaquenil)....stress contributed to cognitive problems....Since I am semi retired and no longer have a stressful job +caretaking elderly parents +
dealing with problems w/ mentally ill family member....I feel a lot better; and as time goes on I find I can increase
my work load....ie see more patients (I am in the medical field)
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