@mutley64 

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mutley64

MS Burn Out - Does it exist ?

Hello I had an appointment with my Neurologist today and he mentioned MS burn out to me which I've never heard of. Has anyone else heard of this ? He basically said because of my age he didn't expect there to be any new activity or progression and would keep me under review with my next appointment in 12mths time. When I queried this further he basically said as people get older often there is less MS activity and it can burn itself out. Is this actually possible I thought MS is a degenerative progressive condition ? Do I take from this he thinks I've had MS for sometime and managed to get away with mild symptoms until the past couple of years ? I'm 58 years old and my first MRI in Jan 2021 found lesions in my brain and c spine and I was diagnosed with " probable MS ". He said the lesions could be months or many years old. My second scan in July 2021 was stable with no further changes. My lumber puncture which was done last year found no inflammation present so he has not been able to formally diagnose MS. My latest MRI was only 10 days ago and he said he would need to study it in more detail and would write to me once he had but he had had a brief look at it before I came in and he couldn't notice anything new. I have chronic fatigue and daily neuropathic pain pins and needles burning feet and numb hands. Severe pain at times in my left arm like it's been crushed or trapped in a door which is a fairly new symptom. He said this might be a trapped nerve. I've also had a new symptom of a burning hot and bright red right ear tingling on my nose and right side of my cheek most evenings the left side is completely normal. I told him about this but he said its nothing to worry about. I feel more confused than ever about what is going on . It's only that I pushed doctors in the first place to get my first MRI due to how I felt after I was told by my GP I had depression and anxiety and it was psychosomatic! I'm on Amytriptaline and Citalopram along with high dose Vit D and other supplements. Should I be happy and feel positive about what my Neurologist has said , it sounds like I should ? For some reason I'm not and I'm feeling anxious and unsettled. Probably not helped because I received my PIP form to complete today dated 6th May with a completion date of 6th June and there is a 4 day Bank holiday inbetween . Sorry for the long post x
@GeorgeH

Hi, I have got no idea but I just thought I’d let you know I hear you. Doctors don’t half say careless stuff without thinking how it will effect the patient. I was told for 18 months of numbness and extreme pain that I was ‘Middle aged, depressed and making it up’ It’s horrible not knowing what’s going on. I was only diagnosed this month so I can’t answer your question, can’t answer many really! But hi and I hope you manage to get some proper answers. X

@lemon

I was also dismissed by GPs first, and appointments with neurologists often leave me anxious and with more questions than I had before them so you're not alone feeling like this. My understanding is that there're relapses and they get less frequent with age, and then there's 'smouldering MS' which is progressive in the background. Never heard of MS burn out but I'm also reasonably new to this. Probably worth waiting for him to review the scan and take it from there?