900662 tn?1469390305

Worse than DX of demyelinating disease for me?

Hello everyone,

I want to say that I've lost  confidence  in my MS Dr awhile ago..

I have appointment to see a new Dr in March.

I fear and so hope he is wrong about his DX.  I have had declining  cognitive function over the years.

During my last exam in early Febuary I failed his memory tests, dropped many pins during the pin test.
lost of balance with my eyes closed..   walking heel to toe, I lost my balance..

He said he no longer  suspects  demyelinating disease . ( six  lesions on the brain & two on the c-spine)

He gave me a new Dx of  mild  cognitive impairment.   and  Myoclonus  ( jerks I had for a couple of years) I did labs for and nocturnal OX study,  all those came back normal  for the myoclonus mimics .

                      HERE"S my fear    if he is  correct  

Its early on  set of   FTD,  this is rare form of  dementia   Frontotemporal dementia (FTD) is a group of disorders caused by progressive cell degeneration in the brain's frontal lobes  or its temporal lobes!!!!!

I will under go  PET scan of the brain,  the scan unlike the MRI  will show what parts of the brain or working or not working  effectively ,   where   the MRI  will shows damage.

I'll do  another Spinal tap  looking for missing or excessive  proteins ,  many blood tests and  more neuropsychologist   testing,  I've done this twice before and that has shown damaged working memory...

I should have all the testing done by the end of May..

             TO   ME   THIS   IS   THE   WORSE   POSSIBLE    DX...     :- (

your thought are appreciate..

thanks everyone
8 Responses
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4943237 tn?1428991095
I've just had a bit of a look on the internet for MRI findings related to FTD.  Not one of the articles mentioned anything about lesions in the spine and the vast majority of them mentioned atrophy of the frontotemporal region of the brain rather than lesions per se.

Is it possible this Neurologist has a 'thing' for FTD, a bit like neuro's specialising in migraines generally find migraines and those specialising in Parkinson's generally find Parkinsons, even though it could be MS?

Best wishes

Helpful - 0
5887915 tn?1383378780
Hi JB,

FTD "can" be genetic & as my grandfather and mum have had it I have a chance of inheriting it. I think it's around 40% of cases are clearly genetic. I know I currently don't have it but I do know there is a chance I could get it in the future. My mum had genetic testing done but I will not be given the results & I have decided not to have testing myself or even go down that road to be honest.

Not all cases of FTD are genetic and there are numerous forms of FTD and each one can show differently in its physical appearance. For example some forms may present with speech problems predominantly others may have behavioural issues at the forefront. Some people may have MND/Motor Neuron Disease (ALS & associated Neuron diseases) with FTD which can present before or after the onset of the actual dementia.

The genetic thing is the only reason for my concern really but I have learnt that if it's going to happen I will have no say in it anyway so what's the point in worrying about it.

I am not sure what your neurologist is seeing to have suggested such a rare form of dementia as there are so many more common forms. FTD is not just one entity either as there are many variants so the term FTD is an umbrella for about 5 or 6 (?) different forms.

It certainly won't hurt to have further testing to possibly find out more about what's going on with you. I just know that the neuro did not immediately jump to FTD with my mum and was cautious of any dx until all the tests were complete and he was certain. It took a year of tests and being under a Neuro before my mum was dx.

My mum is in a clinical trial for a drug that is hoping to help people with FTD feel a bit more functional/comfortable & this is where she took genetic tests. She is one of only a few in Australia to participate as it is such a rare form of dementia.

I hope this helps you a little JB. Oh and by the way that last snowman of yours is a giant. :D

Take Care,

Helpful - 0
900662 tn?1469390305

to answer your question,  
  I'm interested in what has made you feel you may have a form of FTD?

I don't think I have   FDT,  he thinks I do.  

I'll  go thru the testing to make sure  tho.

Helpful - 0
429700 tn?1308007823
I agree 100 percent with supermum_ms.  The lesions on your spine with your other symptoms looks like MS to me.  

It is possible to be misdiagnosed.  I was misdiagnosed by a rheumatologist and wasted years of not having the correct treatment.

Best luck with your second opinion.  

Helpful - 0
987762 tn?1331027953
Hey JB

I understand your concern, FTD is scary on many levels but I don't understand how "he no longer  suspects  demyelinating disease . ( six  lesions on the brain & two on the c-spine)" and consider such a rare disease like FTD as even a possible alternative instead?!

I agree with Karry it's a huge leap........what about your spinal cord lesions, which are definitely pointing more towards demyelinating diseases being more likely, than a rare condition like FTD that doesn't cause spinal cord lesions!

Mild cognitive issues - executive dysfunction, information recall, working memory, attention etc are all cognitive issues associated with MS

Fine motor skill, hand dexterity, hand coordination - associated with MS

Unbalance with eyes closed, heel to toe - is a failed Romberg Test and associated with MS

Uncontrollable jerks of a muscle or a group of muscles - Myoclonus is associated with MS    

I seriously think this neuro is looking for a dodo, when your already looking and quacking like an MS duck!

I would highly recommend keeping your mind off this idea and breath.......your second opinion is happening very soon and it would definitely be in your best interest to not get anxious or misdirected, just try to focus on getting all your test reports and what not ready for your second opinion.


Helpful - 0
5887915 tn?1383378780
Sorry I meant to put my mums MRI showed atrophy in frontal and temporal lobes.

Helpful - 0
667078 tn?1316000935
I am so sorry. I really feel for you.

Helpful - 0
5887915 tn?1383378780
Hi JB,

I know a fair bit about the different forms of FTD as my mum has it and her dad had it so I'm now hoping I don't get it. I have been reassured that I currently don't have it as it doesn't present with lesions rather atrophy or shrinkage of the frontal (front) and temporal (sides) of the brain.

My mum had a PET scan which showed atrophy in the frontal and temporal lobes, genetic testing, (I won't know the results) lots of blood testing, MRI and EEG. In FTD you have too much of a substance called Tau which we all have but its in excess in FTD.

My mum didn't have memory issues at first and this is what can stand out from other forms of dementia. She completely lost empathy and had some behavioural issues and she passed the in office cognition testing but you could see something wasn't right with her.

I'm interested in what has made you feel you may have a form of FTD? It's a big leap from lesions in the CNS to this and I wouldn't start worrying you have this until as such a time you have been told you have it. I have spent countless hours worrying myself about getting FTD but in the end I will have no say over it if it does happen to me.

Please try not to sit worrying about this as it may never happen JB and I'm talking from experience here.

Take care,


Helpful - 0
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