After suspected stroke (CAT scan) had diagnosis changed to MS after MRI this year. Symptoms were of a facial paralysis. I am a retired doctor and looking back over my life I can see that I have had symptoms and signs since my mid 20s when I had electric shocks on bending neck and did see a neurologist who did not investigate at that time. At various points I have suggested the diagnosis eg when I had two previous facial palsies and an episode optic neuritis. I have had a fairly normal life over the decades with odd symptoms here and there and maybe not having the best balance. I have had no physical disability and remain fit for walking etc. Since this last episode however I have suffered from daily fatigue and cognitive problems (short term memory problems, word finding and difficulty focusing attention). I have met my neurologist once before and once after diagnosis. I have been told that treatment with DMTs is not appropriate just now but I havenât been told the reasoning behind this decision. It has been suggested that my neurological problems wonât improve but I havenât been told that I have progressive MS. I have been put on to yearly reviews.
I am exasperated at having tiredness that is not relieved by rest and have lost confidence. I havenât lost my sense of humour and have supportive friends and neighbours who are happy to play charades with me as I try to describe the words I am searching for.
I am trying to decide between just getting on with life as I am as in many ways I have been very fortunate or asking for a second opinion from a neurologist who I might have a better rapport with and find more informative.
Welcome Joan
I am sure you will do your own research and the MS Society and MS Trust websites are the best place to form sound foundations.
The general consensus is there is little medication proven to help with primary progressive MS.
There are people who will tell you of their wonder diet, but the thing to do at the moment is probably to try to continue with life as best you can as physical social and cerebral activity all help.
I was diagnosed 5 years ago at 62 but with relapsing MS. To an extent we are lucky to have lived a long time before it has hit us and the economical impact is less.
While MS will undoubtedly impact your life going forward there is still a life to lead!
Hi Joan, well that is a long way round to a diagnosis youâre not too sure about, eh?
Being a doctor yourself would probably give you insight where it wouldnt otherwise.
It took 22 years for me to be diagnosedâŚthat wasnt a fun time! Iâm 70.
Iâm glad you still have a sense of humourâŚit helps.
Boudsx
That must have come as a bit of a shocker after all these years, even if in the back of your mind you had long had a hunch.
The consultation does sound rather unsatisfactory, and I can see why you are considering a second opinion or, at the very least, a wider-ranging consultation with the neurologist who gave you the dx, now that you have got over the surprise and know what questions you want to ask including a discussion about disease modifying treatments and, if not, why not. No doubt you will be familiarising yourself with the prescribing guidelines, but as far as I know age is not a show-stopper. It certainly isnât for me and Iâm about the same age as you.
I do think you should be given the reason why DMTs are not appropriate, and not have to wait for a yearly review for that! If the neurologist is going to be that uncommunicative now then how likely is s/he going to change? It may be wise to find another, and sooner rather than later. It is far better to have an honest discussion, even if the answer is â we donât know right nowâ, than no discussion at all.
Fatigue is a difficult one. Have you come across Prof Gavin Giovannoniâs blog?
Hereâs one from him on fatigue.
Great recommendation, Prof Gâs blog is about the best info out there.
Thanks, I tried to give a quick humorous reply⌠but my mind went blank 
Thanks, not having DMT may well be a reasonable option but I would have liked to have had some input into the decision or at least an explanation. I can see on-line that practice varies from specialist to specialist. I do feel lucky to have got to this stage without severe impairment and yes I am in a situation, retired now, to make the most of life.
Thanks, the consultation did feel unsatisfactory but that may just be the nature of MS and my intolerance of uncertainty. I was delighted to find that I had not had a stroke but had assumed that my progress be as before, mild symptoms getting back to a nearly normal baseline. This time the fatigue has been marked and has continued for over a year while I was getting investigators and scans. I had thought it was caused the stroke prevention medicines I had been put on as they all could cause tiredness and really looked forward to coming off them all. I have not been on any for months now and it hasnât made a difference.
Thanks for the link to this site Ziola. I have had a look at the site and I am impressed by his clarity. It has piqued my curiosity in several directions then I remember itâs talking about me - aargh! As my symptoms are more mental functioning than physical I am interested in the use of DMTâs for cognitive symptoms and I see that there are some trials
That sounds like a good thing that you are forgetting that it is about you - means you are keeping a rational and objective mind as you read it!
I gather theyâre not keen on DMTs for PPMS (just patient stories Iâve read).
But you could perhaps tackle the fatigue with meds - modafinil if theyâll prescribe that?
I sympathise - Iâm 99% physically, but âbrain symptomsâ are challenging.
Hi Joan would be interesting if you could update us on your thinking and researching.
There seems to be a live debate on whether DMTs are worth doing at 60+ age, vs increased side effect risks; what are you thinking?
Fatigue remains incredibly under-researched, dropping between different medical disciplines, none of whom âownâ it. I wonder if primary MS fatigue has unique characteristics of (1) being intermittent in the day, and (2) not occurring if our bodies decide today is an important day (e.g. jobs to do, big social event); so weird how this happens.
Best wishes
Hi my fatigue has improved somewhat. Not being a good diarist I canât pinpoint the reason for this because I have inevitably changed my behaviour. When the timing of the spells of fatigue seem only loosely associated with effort and activity I have found that doing longer dog walks or travel only even second day and house chores and gardening etc in days in between may have worked. This has lead to a net reduction in activity not just re scheduling. Fascinating for me is to find that thinking seems to use energy even more predictably than physical activity⌠having been used to study and academic activity throughout my life it is weird to feel tired after doing my banking or chatting to a group of people. I have just had a review MRI scan and will perhaps have a chance to speak to my MS neurologist to discuss further his thinking of my stage in MS. I feel more optimistic having felt some improvement albeit nearly 18 months after my last known MS activity.
many thanks. fascinating on your fatigue. thank you.
Ref DMTs at our age, may be of interest;
You might consider joining this online update in Nov;
Did you look at Prof Giovannoniâs blog where he describes fatigue, mentioned to me above? This lead to me following this MS expert on MS-selfie. I am impressed by his aim to have people with MS much more involved with the decision making in their own management and he provides clear information on many topics. I believe that we should be given all the information regarding risk benefit of treatments AND be told frankly about financial imperatives that affect our management. I have been told in my one discussion post diagnosis that treatment is not appropriate âjust nowâ but my Consultant did not elucidate the thinking behind this. I have just had my first yearly review MRI scan and I assume that someone will be in touch to discuss the results. I will try to be armed with very specific questions the next time.
The distinction between people who have been on DMTs for years and are now old and people who come to MS late in life is not elucidated.
There is a considerable number of people diagnosed post 55 (over 15% of all cases), indeed more than those under 30. As they are not in trials there is little hard evidence to go on and they are often simply bundled up with those who have had years of suffering rather than the newly diagnosed.
totally agree.
for people who are diagnosed in older age;
what % do you think actually had an active MS disease process for decades before (perhaps like Joan)?
and what % had the MS disease process starting in older age?
ânot appropriate just nowâ sounds like one of the out of date MS doctors who has not read recent research about how hitting MS with the strongest DMTs asap gives much better long-term outcomes.
Natural experiments (Australia vs NZ Media Release - Kiwis with MS 'light years' behind Aussie patients in treatment access and quality of life - study. | Multiple Sclerosis Society of NZMultiple Sclerosis Society of NZ , Denmark vs Sweden Early High-efficacy DMTs Linked to Better RRMS Outcomes in Sweden) show the country which gives stronger DMTs earlier has significantly better outcomes vs neighbour country which does not.
Incredibly many MS doctors just do what they were taught when in training 30 years ago. Incredible. But itâs a small, self-satisfied world, and they get no pressure because the poor people seeing them now look ok and do not themselves realise how key todayâs decisions will be for their quality of life in old age.
This is the source document. It doesnât tell us how long the person suspected MS. It also tells us nothing about those who have MS and are never diagnosed.
I have asked myself two related questions
One: why do people expect the rate at which people start MS to decrease with age? This is not in line with most diseases such as cancer.
Two: What proportion of people are discovered to have MS rather than having sought a diagnosis over several years?
In my own case I had a general decline put down to not enough exercise by my GP. I had an acute episode being sent to the Ambulatory Care Unit of a general hospital with no neurology department and had numerous tests including MRI and diagnosed remotely. My day ended with a lumbar puncture and a prescription for IV steroids in hospital.