On just two occasions, 7 months apart, I found I could not get the meaning out of sentences, neither written nor spoken. This was transient, gone in perhaps 15minutes, or perhaps less, but frightening.
Pmr diagnosed 18 months ago and now on 7.5mg pred, but I am marginal having tried several times over six months to get from 8.
On both occasions I was after peaks of stress/activity and also immediately after eating lunch. On both occasions I returned to a magazine but could not continue where I left off. On the first occasion I then could not understand the radio but could understand the emotions, and recognised the energy and rhythm of the ads. On the second occasion a friend was talking to me and I could not understand but was well able to plan a plausible retort when he would finish.
I understand each word individually, I examine the sentence for commas, or pauses, knowing that the words make a sentence and a sentence should have meaning.
I have had a healthy brain scan immediately before pmr hit when I was concerned I had misplaced a few words (aphasia). This I now believe was caused by severe b12 deficiency which was discovered later on testing in response to my pmr illness. Since I was put on b12 injections it has not recurred.
I notice lots of comments about brain fog, but I am foggy about what that means. I am going to go to a rheumatologist for first time to enquire whether this, I think unusual symptom, is linked to pmr or pred, but I thought perhaps I should ask my friends here too if it is familiar to anyone.
Thanks
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Harbel
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Hi, before I was dx with pmr I had terrible trouble finishing sentences, finding words, concentrating on anything, spent time bsitting open mouthed and staring in front of TV or newspapers. Initially on pred this passed but has appeared again with the two major flares I have had. Before dx it was so bad I was thinking about seeing my gp to see if I had early onset dementia at 55. I hope this helps.
Thanks so much, I was feeling unique in a terrible way. At least I now have hope that there are more possibilities than one. I am 63. Really appreciate the support.
Hmm. If it was me I’d go back to the doc as scans can pick up some things but a lot they can’t. The thing that makes me wonder is that your ‘drop outs' are quite profound and might be due some neurological issue not involving changes to the brain tissue that is scannable.
However, I do empathise with being unable to concentrate on speech or word recall like my brain just got too tired with the effort of keeping the lights on. This was the worst at high doses and then again when my adrenal function was poorest from about 7mg-3mg. If this is more when you are stressed it might be because your demand for cortisol is higher but the Pred dose isn’t enough like it used to be when it was a larger dose. Meanwhile the adrenal glands still think their time to wake isn’t yet so your body can’t cope. At this time I thought I’d never regain clear thinking again.
In the weeks to diagnosis it was terrible and I’d completely lose my thread half way through a sentence and at work that was bad, but I put it down to stress and it turns out I was extremely low in VitD. It’s better these days but I’ve never regained my former sharpness. I also lost my ability to play Scrabble or do mental arithmetic but these are back on line.
Thanks SnazzyD, yes certainly I will consult my doctor and take the professional advice.
It is great though to have your take on it too. Adrenal insufficiency is a possibility I suppose under enough stress even at 7.5mg. It is really great to have support when needed. Thanks, you guys.
My sister with RA, got very confused at times, till I told her to have a blood test......very low on VitD, she is totally different now. Puzzles me why this test isn`t done on everyone regularly, I don`t think it`s expensive, but the treatment certainly is cheap!
Of all the changes in the last 4 years of PMR I most miss my brain. I was a pretty sharp organizer/planner but that has left me. I marvel at times that people on here can remember all the details over the years of illness. I struggle with decision making and anxiety over it. I have stepped way back from responsibility in some areas of life, even retired as I thought I might be a danger where I worked. But it's all been ok. I've adapted and hope at the end it will all come back. Currently at 6.
Thank goodness you found out the root cause of it and it's now under control.
It is amazing to find that Vitamin or Mineral Deficiencies can cause such alarming symptoms but it happens often , and unfortunately the Vitamins aren't always the things that GPs think about testing early on before beginning scans and other invasive tests.
Out of interest , did you find that you got a headache some hours after having one of these events?
This can be very common , as these severe Neurological symptoms , are often a form of Migraine without Pain , or Migraine warning , no matter what the cause may be .
People , including Doctors, don't have enough awareness of the different types and disabling affects of Migraine , and just dismiss it, but it actually comes in third after Heart Attacks and Strokes in Emergency Care for causing severe Physical symptoms that require critical care .
I hope you continue to keep clear of the Brain Fog xx
Thank you Blearyeyed, yes headache present but not severe. However I did lie and tell my friend I had to go due to a severe headache, and I'm not due much credit for that excuse.
I do tend to get migraines but not with severe headaches lately. They didn't affect comprehension though previously. Thanks for helping.
They are typical signs of a TIA (transient ischaemic attack) since they are quite profound and are gone quickly. I have had 3 separate transient global amnesia episodes - where you form no short term memories for a period of some hours. These are common after eating or when under certain forms of stress so I wonder if there is any connection between the two?
But like Snazzy I would be asking for more examination of the scans you had done.
Totally agree with you PMRpro. You have hit the nail on the head.
My late husband had two very short episodes when he had short memory loss .
The neurologist told him to immediately take 2 coated aspirin. It helped.
Sometimes it could also be caused by a very minor stroke and we get over it without feeling any changes.
As we get older the brain can changes which can cause these little bothersome spasms, but I certainly would get that episode of brain fog looked into by a neurologist.
BTW.
Having recently lost an elderly family member through a fall, which later (24 hours later ) caused a hemorrhage on the brain. I thought as some of us oldies may want to read this 👇for reference.
👇. Source. Wikipedia
FAST is an acronym used as a mnemonic to help detect and enhance responsiveness to the needs of a person having a stroke. The acronym stands for Facial drooping, Arm weakness, Speech difficulties and Time to call emergency services.[1]
Facial drooping: A section of the face, usually only on one side, that is drooping and hard to move. This can be recognized by a crooked smile.
Arm weakness: The inability to raise one's arm fully
Speech difficulties: An inability or difficulty to understand or produce speech
Time: If any of the symptoms above are showing, time is of the essence; call the emergency services and go to the hospital immediately.[
Thanks Pmrpro, yes I was putting the last one down to that and leaving it as a once off. I think for the first time in ten years I was so tired that night before that I fell in bed and decided not to get back up when I remembered I hadn't taken aspirin. I thought the after eating connection could have something to do with blood leaving brain for stomach. I hope you have got over the tias, and thanks for sharing. Thanks too for all your volunteering on this site. It value is very evident to me on a day like this.
This was an article published a while ago from the Lupus organisation referring to Brain fog - Might help you - but obviously if you’re still worried then speak to GP.
Personally, I'm of the opinion that if your body does something new and interesting and you don't like it, it's time to consult a professional, even if it "goes away".
If this happens again while you're reading, bring a copy of the passage to the examination. If it happens while you're with someone else, ask them to write down what they witnessed, or ask them to come with you.
And sooner rather than later. If it's nothing, that alleviates your anxiety, and we all know anxiety isn't good for anyone. If it's something, getting a diagnosis and treatment early leads to better outcomes.
Hoping this turns out to be something minor, or nothing at all...
My brain fog since Pred. Is not really as precise as that. I forget people’s names - actors - singers etc. I lose my glasses. I stand upstairs wondering why I am up there. You describe your experience very well, has your doctor referred you to a neurologist?
On reading other replies I have remembered that before my PMR diagnosis, I used to get very flustered at work and lose my words. If someone asked me a direct question like “ what’s your son’s name” I would go blank and feel stupid. All this went with Pred and demanding less of myself. You have had some good advice.
No SheffieldJane, my most recent experience was just two days ago and only now getting by the denial. Now intend to go tomorrow to gp. Dont know whether he will recommend neurologist, rheumatologist or perhaps cardiologist if it is a TIA.
Thanks for your response, you are all a great bunch. Great to get nudged in the right direction.
A suspected TIA should be referred to a specialist clinic within a week - it's part of the stroke service and they have quick access to the relevant tests rather than having to wait and should be a one-stop appointment - you see a doctor who assesses your symptoms and then you have the tests done the same day in a good set-up.
If it’s TIA you will need a neurologist...but take one step at a time, go to your GP and get the proper directions. We all read google far too much and get scared out of our boots..
Depends on the country - in the UK and probably much of Europe you are unlikely to see a neurologist first, it will be the "Stroke lead" - with a multidisciplinary approach.
As I have tapered in the last 14 months, I have found I occasionally have times when I cannot remember a particular word. If I panic it gets worse. I find myself mentally going through the alphabet hoping a letter will trigger the beginning of the word. I tell myself it is the nature of this illness and it will be better when I get used to the lower dose of prednisone and the adrenals start working more vigorously. I have been on 3.5mg for the past week.
I had a horrible experience the other day and had to say to whoever I was talking to that I had lost all my nouns! They do say you're okay as long as, for example, you only lose the name for something. So you can't think of the word "key" but you know what a key is and what its for, how to use it and why you need it. It's looking at a key and no longer knowing what it means when you're in deep trouble.
I don't feel like it's okay, but there's nothing I can do about it. I exercise, eat healthily, don't smoke and barely drink, I try to keep my brain active. I also feel like it's something which I've had all my life, only now I have to worry because other people will blame it on age and think I'm losing my marbles.
But in the example I give you remember the word later. It's not a permanent loss. Just a case of misfiling a word so the retrieval isn't efficient.
It is a manifestation of one bit of lost memory retrieval that can be found in some head injuries - and probably stroke. But they tend not to last - as you describe.
I empathise. My memory has always been poor and now it’s much worse, in the way you describe. I’m about to taper to 8.5 and I’m interested/nervous about it getting worse while my adrenals wake up. The thought that it might get worse is worrying.
I guess the only reason I noticed it was because sometimes you can say apologetically, sorry, senior moment and describe what you mean in other words. In this particular iinstance the "other words" wouldn't come quickly enough. Yet I was perfectly capable of making the comment about vanishing nouns and then moving on to something else with no issues whatsoever!
On the other hand I can point to an event from my early 20s. I knew someone with the surname of Moon. Also around the same time I read a book by an author with the surname of Moon.
When it came time to remember the person's name for some reason I could not, the author's first name kept coming up, Eventually I did get the name I wanted, and it seemed to me then that I'd "misfiled" the name. As if the brain was a sort of filing cabinet and I couldn't retrieve what I wanted because it was in the wrong place. I suppose nowadays with computers you could say the original information had been overwritten by new information.
So we aren't really "losing" the words we need, but something is interfering with the retrieval and I think lack of concentration plays a part in that. I have forever been able to lose my keys or other small objects almost instantly, not because I've been senile since I was 8, but because I haven't paid attention to what I was doing. Perhaps language is like that. The day I was fumbling for my words there was an awful lot going on around me, a wealth of noisy distraction.
I had a minor stroke less than 2 months before my PMR symptoms appeared. I had none of the things associated with stroke: my cholesterol was good, no high BP, no diabetes, etc. No obvious reason. Yet, when I was diagnosed with PMR (nearly 4 months later) no doctor would say the two were connected. Yet, we don't know what causes PMR, right? About 6 months before my stroke, I had a funny, persistent headache that seemed to wrap around the outside of my head from the back to my temples. No, I didn't go to a doctor but took over the counter pain killers. Now, in retrospect, I wonder if it was GCA. Who knows? There seems to be so little research and so much more to know.
No, I wasn't. In fact, none of my doctors (GP, rheumy or cardiologist) believed that the stroke and PMR might be related. But thank you for this. I'll ask my GP.
I recently set out to visit my friend, got to the end of the road, couldn’t remember for a moment where I was going.
Heron, it happens to most of us, I put it down to stress and coping with too much at once. Example, doctors appointments, medications and times to take them. Bills to be paid, shopping, etc etc etc.
It’s ok to forget birthdays, I never remembered birthdays , even in my 20s
I took a friend out and "forgot" to drop her at hers. We were almost at my house 3 miles away when she asked where we were going..... I have done this twice..... 🤭
Brain fog has awful at times. Apart from the usual searching for a word or not remembering where I put stuff, I have actually lifted stuff out of a hot oven without oven gloves-not once, but twice! Realising my mistake too late but trying not to drop the roasting tray, I burned my hands quite badly! Haven’t done anything like that since getting to a low dose of Pred. Don’t appear to have any vitamin deficiency.
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