Misdiagnosed with dementia! Nothing on pet-ct scan possible MS?

Hi there everyone,
I’m new here as you will see :blush:. In 2016 I was diagnosed with A rare form of frontotemporal dementia (subtype progressive nonfluent aphasiaj. A MRI scan confirmed devolution in the frontal and temporal lobes. Symptoms very similar to that of a MS in many ways…… balance, jerks, pins and needles in hands and feet, body itch, bladder and bowel issues, swallowing problems, pain, eye pain head aches and an intermittent stutter Etc etc……
I also have severe degenerative disc disease in both lumbar and cervical spine with spondylosis and disc impingement.
Last year I was called into neurology unexpectedly as in the trust I’m under if you have a terminal dementia diagnosis they don’t generally “keep you on the books “as there is nothing to be done! I was given a pet-ct scan which showed that my brain was “functioning “normally so my dementia diagnosis was rescinded I’ve now been told I have functional neurological disorder which I totally disagree with! the symptoms I’ve been going on for eight years, A slow steady decline they cannot connect this onset of FND to any life trauma nor do I have non epileptic seizures or the spasticity that is associated with this condition.
At our last appointment we requested a lumbar puncture to test for MS as for sometime we have had concerns the diagnosis was wrong and it could be this but were told that if it had been it would’ve shown up on the pet CT scan! I just wondered if anybody could tell me if this scan is definitive diagnosis or should I still be asking for a lumbar puncture? Sorry for the long post thanks in advance for anybody that reads this and any responses that I may get. suzi x
Oh btw we may not be getting the best care as we have a current complaint against our local hospital trusts about the misdiagnosis of dementia :thinking:

Suzi. Wow. You’ve been led a merry dance!

You’d think, after the mess they have made, they would at least do a lumbar puncture to set your mind at ease.

If your MRI shows degeneration (atrophy) in the frontal and temporal lobes, then this is likely to cause symptoms. I presume it was more advanced than expected for your age? However those areas of the brain have higher levels of reserve (can rewire to some extent) so a well-used brain that has built up a lot of connections can have quite a bit of resilience (or so I am told by my GP friend).

To me it sounds like good news that the pet-ct scan is showing your brain is functioning pretty normally. Sounds as if you have still got some good levels of connections there. I don’t know how much a pet CT scan helps with MS diagnosis. Think it more useful in showing progression over time, after diagnosis. It is known that the brains of people with MS atrophy faster than those without MS, and that a bunch of pet-CT scans of people with MS will show reduced brain function compared with a bunch of normal controls - but that is on a group level. On an individual level I would guess less so.

You obviously need a correct diagnosis so you have an idea of how to plan your life. If it really does turn out to be FND, then the prognosis is much better, and the brain has a chance to rewire itself more correctly. I’d certainly prefer that to a diagnosis of dementia, but only if it was a correct diagnosis.

FND used to be a used as a synonym for conversion disorder - and is still seen by some (many) as this. But got dressed up more recently as ‘software’ and ‘hardware’. Though interestingly this concept has opened their minds up a lot! They started thinking through the implications of what was initially a bit of wording to fob off patients! This very recent video shows how they are starting to view FND and patients differently. More an acknowledgement that they don’t have the tools to see all that is happening in the brain.

I think rewiring, and brain plasticity is very important. We know that patients who have had a stroke (major hardware issue), can work on exercises, mental and physical to alter their software (rewire bits of the brain) to regain function.

I can understand a bit where you are coming from. There seem to be some parallels with me. I’ve not got a diagnosis - currently seeing a new neurologist, so maybe after 40 years we might finally get there. Though I do have cervical dystonia (diagnosed 10 years ago, but may be secondary to something else rather than primary. Brain too plastic for its own good!). I have a lot of atrophy of the brain too - it looks like a brain of an 85 year old with alzheimers. I’m 63. And I’ve got lesions. I’m trying to make sure that I optimise everything - through supplements, diet, through using my brain, through paced exercise and relaxation, and by focussing the brain and exercise on those activities that I really enjoy. At the moment that is all I can do, without a diagnosis. It may be all that can be done should I get a diagnosis.

Hope you do find a way to get to the bottom of it. I presume you are going for a second opinion elsewhere?

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CT scans are not used for MS diagnosis. Yes, your scan might have showed some damage, but that should have just directed your doctors to schedule an MRI to see what was actually going on there.

I would ask for an MRI before the lumbar puncture (INSIST on an MRI as soon as possible!), just because it’s less invasive and has a much lower risk of side effects. Then, if the MRI shows lesions, you could ask for the l.p.

And try to find a new doctor.

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Thank you for taking the time to respond it is greatly appreciated!

I maybe should of expanded slightly I was diagnosed at 50 by memory clinic. Problems started 3 years earlier with memory, cognition, ability to plan went out the window. I was specialist MH social worker with one unit to finish on masters degree and just ‘forgot’ how to do parts of job…. I’m 56 now.

Admittedly the predominant reason for having to retire at 48 was physical pain (DDD, psoriatic arthritis and failed knee replacement surgery they had three attempts at it :woman_facepalming:) having reports returned from uni and losing spatial awareness (crashing my car 4 times in as many years into bollards not people luckily {on receiving dementia diagnosis I had to give up driving licence so a blessing I suppose}.

Neurologist flatly refuses anymore tests so yes I’m guessing out of area 2nd opinion is next option.

The FND diagnosis although in someways a better ‘outcome’ in that my life is no longer limited (I was told I had 6-10 years 5 years ago….) but the treatment is akin to faith healing in my opinion… ive been told if I don’t ‘believe’ in the CBT/NLP program and accept my diagnosis I’ll never get better! The neuropsychologist told me it was all because I’d “just stopped concentrating” because I was working too hard! (I’ve always been on the go!) which ties in nicely to the Freudian ‘conversion disorder/hysteria’ diagnosis ah well.

I have an MRI booked on upper cervical spine in next few weeks for we shall see what that shows.

The thing is I know my body, in 2013 I was misdiagnosed with fibromyalgia and ME, I knew this didn’t sit right, feel right and something else was wrong finally I was Re diagnosed with hyperparathyroidism and had a growth removed from parathyroid in 2015.

I just really feel this isn’t my mental health (I’ve suffered and managed GAD for years)

What would you do if you were me? X

I know that a lot of people seem to have lesions on their spines, but mine are all in my head in spite of me having a lot of “spinal related” symptoms. I think under the circumstances, you should have both spine and brain MRI’s.

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Definitely get a second opinion at a different hospital trust.

Thanks for giving more background, and with an earlier misdiagnosis of fibromyalgia / ME when it was hyperparathyroidism I can imagine your trust in doctors has been severely eroded.

The thing to remember with neurological conditions and the brain in particular is that the brain does have a wonderful capacity to rewire and repair itself. That is what you need to be harnessing into, whether the damage to the brain has been caused by injury, stroke, infection, inflammation, chemical changes, toxin buildup or maverick rewiring. The ways to help rewire are the same for all, regardless of cause. And a good place to look is at children, as they are developing the wiring from new, all the time, to learn to walk, to learn to talk etc etc. They do so much by repeating things.

In your case of spatial awareness, children develop that by playing games - whether in the early stages putting pegs in holes etc, or, as they are bigger playing hide and seek, football etc. All in the context of enjoying themselves. As we get older and start losing some of these things we can reinforce what we have or redevelop some of it. If not by playing tennis, maybe playing croquet, crazy golf, playing catch with the grandkids, throwing balls for your dog but trying to improve accuracy of where you get that ball to land.

I’ve been having difficulty with word recall. I’ve now got into the habit of when the word does come back to me, to repeat it to myself, but congratulate myself with a smile - it is about reinforcing those neuron connections. I do a lot of botany recording. I noticed I was really struggling to remember the names of the plants this year. I use a dictaphone to record on. I decided I was going to get those plant names back into my brain. Hammer them back in! The act of saying out loud to the dictaphone seems to reinforce the memory far better than just thinking it. If you notice, children chatter away to themselves - again this is all part of building memory. I’ve become a bit of a ‘strange middle aged woman who talks to herself’! As others are talking away on their mobile phones, nowadays no-one bats an eyelid as I talk into my dictaphone! And two days ago I went out with my botany friends and many of those neuronal connections were back! I was really proud of myself.

I think the key is to actually do things you enjoy doing, rather than thinklng of it as doing a series of exercises. You then are rewarding yourself with the feelings of contentment as you do them.

Yes, they do use CBT and physio these days for FND. They should be using these also for MS far more than they do. As they have DMTs (drugs) for some MS patients, they now seem to neglect everything else, like physio and coping strategies. And those with progressive MS seem to be shelved too - no drugs to offer so that is it, you are on your own.

As for trying to get the body better able to repair itself, that is where looking at very healthy diet, and supplementing those things that are known to decrease as we age eg Coenzyme Q10 etc, may help. With certain neurological conditions they know a bit better where things maybe going a bit wrong on a chemical level in the brain. Eg. Parkinsons and dopamine, Alzheimer’s and acetylcholine etc, so it is a little easier to focus diet, choose herbs and supplements, but to be honest it seems there is a huge overlap between them all and it comes down to a very wide diet, good range of antioxidant plants, herbs and spices, to deal with inflammation and oxidative stress that seems to lie behind nearly all of them. And cancer, and autoimmune disease, and diabetes (etc etc).

The division between mind and body is an artificial one. The brain is far more complex than that! One affects the other. It bothers me that some neurologists are now telling patients with confirmed neurological diagnosis such as MS (confirmed by MRI, lumbar punture etc) that they also have FND too! Of course they do! Dealing with health problems that impact on life will impact on emotional health. And damaged neurons may lead to imperfect or maverick rewiring. Their machines can’t really show that up. So that can be called FND!

Now if adding FND to the diagnosis allows access to physiotherapy and CBT for MS patients to get round NICE rules, then maybe there is some logic to adding it … I suspect however that some neurologists / neuropsychologists will see FND wherever they look. They’ve rewired their own brains to see it, even where it doesn’t exist …

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Thanks so much again for such a detailed response. Yes the first misdiagnosis of ME fibro was a kick in the teeth. The 2nd more serious misdiagnosis of terminal dementia has certainly lost all confidence and trust in our local trusts, especially as they are trying to ‘lie’ there way out of who diagnosed me are well that’s in the past moving onwards.
I’m sure that some maverick rewiring has occurred due to me constantly trying to ‘ retrain’ or at least hang in to the meagre skills I have left…
I’ve been doing a similar thing with music testing myself over who sang what etc with Alexa
It’s going to be a journey I guess but I’ll keep you posted. Thanks again so very much. It’s greatly appreciated x