Cog Fog and Temporal Lobes

Primary progressive MS
1

Hi to all on this lovely sunny day.

I watched David Baddiel on tv last night and he spoke of his dad who has Alzheimer disease. He then explained there are several types and his dads type is called “Frontotemporal” .(Picks Disease)

Most of Davids explanation rang a bell with me, as in 2005 ((6 years before dx of ppms), my first MRI showed Cerebral Vascular Disease. My temporal horns had one larger than the other because the smaller one had shrunk.

I’ve just discovered a lot more about this and every sympton described matches my own symptons. It has worsened over the years and I am very frustrated as I hardly recognise myself. My family have noticed the personality changes and how I can easily fly into an impatient, sarcastic, impulsive person, never knowing from one minute to the next if this will happen. I have lost interest in life and I can easily isolate myself into my world. It’s frustrating and very upsetting having what feels like my brain taking a few days off and .

Does anyone have any suggestions? Has anyone heard of this disease, I can find no links to MS on the sites I’ve looked at but the similarities to my own cog fog are uncanny. Because of this, I would like to see a specialist who can confirm one way or another if part of my ppms is the cause or if I do have Picks Disease.

Chrissie x

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Hello, Chrissie.

This does appear to a complex matter. Anything that comes alongside MS is going to throw more spanners into a works already full of them, so to speak. I can sympathise with your changes as my whole outlook has shifted and is now less stable. Our family have been prone to strokes, dementia and to a slightly lesser extent, bipolar, so the future could become very uncertain. I’m just assuming I’ll become less mobile and a bit forgetful. If I actually think too much about this stuff, it’ll do me no good at all.

I suppose the best bet is to get a specialist through your GP. Medication has certainly kept me more stable much to the relief of my immediate family. Are there any support groups online you could look at?

Sorry I can’t be more help.

Best wishes, Steve. x

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Dear Chrissie,

I think it is highly unlikely you would be able to write such an articulate, insightful post if you have frontotemporal dementia. On the other hand, there are, of course, many stressors that accompany MS, and depression and anxiety are common. What you describe about yourself may just fall into those worrisome, but far from catastrophic, categories. I see a wonderful psychiatrist/neurologist who specialises in MS: he’s wonderful. Have you considered seeing someone similar for and evaluation and therapy if needed?

Best,

Lily

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Hi Steve and Lily,

I totally agree Lily, which is the frightening bit for me because I know I sound, and look, healthy but the research I discovered this morning certainly leans towards the Temporal Horns causing difficulties. I very much doubt it is dementia, and, from what I’ve read, I think all professionals would also agree it is not dementia.

Steve, you have been helpful more than once for me and I’m pleased your GP prescribed something to help you.

The first neuro-psychiatrist I saw in 2005 was intent on looking for signs of dementia and on holding a pen, he asked me what it is called, then the same with the phone on his desk! After 3 visits, he referred me to a neurologist. The neurologist didn’t get back to him, a few months later, another referral to the neuro, again, he still didn’t get back. I changed hospital to Macclesfield and now see an MS nurse from Manchester once a year. The neuro specialises in Parkinsons disease and I saw him once. He didn’t look at my notes, and confirmed the MS nurse will offer any support. He also confirmed that nothing can be done for PPMS. I took a list with me so I wouldn’t forget my concerns and symptoms but he didn’t look at it.

I am reasonably accustomed to PPMS and, for now, I am reasonably mobile around the house. Of course there are many many more far worse than I.

My driving licence was revoked on dx in 2011 partially due to the mri evidence of my lack of judgement, low attention span, slow thinking time and irrational impulsive decision making.

Unfortunately, I have read this morning about Frontoemporal problems and the various conditions that can be affected, and confirmed that MS cognition difficulties affecting me as severe as mine is indeed a part of the behavioural change linked to Temporal damage. The word dementia is not used because the deterioration is slower than for dementia patients. A lot of information is on this particular website under the heading Signs and Symptoms - Other Changes.

Yes, it is a minefield. I am trying to find details of a Neuro who specialises in MS and will also be aware of the link to FTD. I will pay privately if the NHS cannot provide a neuro locally. I’m not sure what they can do but hopefully, it will answer a lot of questions and doubts for me, my hubby and my family. Sorry for going one, but I sometimes get carried away. Just realised it’s teatime!

Lily, I have been a writer in my heydays but nowadays, it takes an hour to write a paragraph.

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Dear Chrissie,

It’s not at all surprising you were a writer! Of course I can’t comment on the likelihood of your having frontotemporal damage and what its implications are. I can only commiserate with the fact the evaluation process is often glacial and frustrating. However, I can suggest you see some sort of supportive “talk” therapist as seek further testing and evaluation.

Some therapists specialize in emotional issues surrounding chronic illness; if you can find someone like that, it might be great, but I don’t think it’s necessary. I know from my own experience it can be very beneficial to talk with someone wise and reassuring on a regular basis about all the changes and challenges you are facing…and hopefully you can find someone you like soon.

Lily

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Hi Chrissie,

I really sympathise with your cognitive problems and the worry that it may be some kind of dementia.

My cognitive problems became much worse about ten years ago and my neuro sent me for an evaluation after which I was prescribed a tablet called Aricept, it’s since changed names and is called Donepezil. It’s medication normally prescribed to people with Altzheimers but has also been found to help people with MS who have severe cognitive problems. Without it the only way I can describe myself is that I’m simply not here but with it I’m just like most people with cog fog, I stumble over words, I’m forgetful, no good with change, crowds, noise etc etc.

maybe this would be something that you could ask your GP or neuro about, it could be a huge help to you.

Take care,

Nina x

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3 lines of Touch typing: Thnaks so nmuch my frriends. Takingg me ages to ttye and then correct swo I hope this makes sence…I’m pretentding that I’m still a touch typist age 17 and my findgers flying over the keyb oard. so far so could. ah, just seen a loty of red underlinging so maybe not a good idaea. Ah well, back to the long route and check as i TYPE.

THANKS SO MUCH MY FRIENDS, you are all so very helpful and my mood lifts like the fog of Skiddaw Mountain in Keswick. No, I don’t mean the cog fog lifted, that’s just in my MS world where every blinkin’ step is a mountain.

Anyway, great news. One of the MS Essentials Leaflets…a mountain of which were handed to me at the Neuro Clinic have proved so very useful. I’ve put a different post on PPMS. So…how many tried to read or make sense of the first 3 lines?

Chrissie x

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Oh Chrissie,

You are funny! You had me so worried you just deteriorated terribly from your last post (or I had).

By the way, in the context of possible cognitive impairment, notice above how I called my wonderful doctor wonderful in one damn line. Once I was also a writer once.

So glad the leaflets helped…

Lily

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