Hi there, I’ve just been diagnosed aged 56. Not sure how long I might’ve had symptoms for as I blamed everything on the menopause. I had numbness and tingling which started in my feet in February and worked it’s way up to my chest for 2 months, then appeared to improve a bit, although I still have spongey feet, buzzing, MS hug, twitching finger and muscle spasms.
I wasn’t given any information by the neurologist, just to phone an ambulance if it recurs, so not sure what happens next…
Hello Lindylou
Welcome to the club - sadly…
Graeme
Crikey, that’s later in age than the average, but I don’t think it’s as unusual as it
used to be. As you say, I wonder how long you’ve had it? That is rather puzzling advice from the neurologist, I must say. Ah well, ours is not to reason why.
There is lots of good and reliable information about MS on the main part of this MS Society site, and if you are wanting to learn about the condition, it is a good place to start. I am sorry that you have had this diagnosis and hope that your symptoms continue to settle.
I was 57 1/2 when diagnosed but in retrospect, first symptoms were around age 50, albeit misdiagnosed.
Welcome to the forum Lindylou.
I was diagnosed eleven years ago at 59 and told that there were several episodes in my medical records dating back to when I was 25. Of course, they hadn’t been identified as MS until then.
Now, have you been assigned an MS nurse? If so then that is who you should call first. If you get an answer machine, leave a message and they will call you back the same day. That has been my experience several times.
Ben
Hi Graeme,
Thank you, I’m surprised I was diagnosed as quickly as I was really, I think it usually takes longer. How are you doing now?
Thanks Alison, I’m trying to read as much as I can about ms and late onset (not good I think), but everyone seems to have a different experience of it all.
Hi Ben,
Thank you. I haven’t been given anyone to contact or any information at all, except told to phone an ambulance. Tried my GP but he knew less than I did. Glad to have Google and this forum.
I’m not sure that generalisations are very helpful. Also, I’m personally not convinced by the ‘late onset/not great’ thing - seems to me that the more years MS has to unravel your CNS the worse things are, so a late start is surely a less bad option!
I was hoping the forums might be supportive, but you live and learn.
Hi and welcome to the group. I was diagnosed last year at 47, my consultant thinks I’ve had it at leat 6 years but never been picked up. I would like to think an ms nurse will be in touch with you but if not I’d be contacting the neuro team to ask what happens next. This forum is a very helpful one, always someone giving advice and helping people understand ms a little better. Take care, Angie❤️
Thanks Angie,
I have received another Neuro appointment now, so hopefully I will get a bit more guidance.
I’m not aware of any earlier symptoms in my case, but maybe I did and just blamed the menopause. x
Lindylou
I’m glad to hear you’ve another neuro appointment, and hope you get a bit more information this time.
If it helps, write down everything you feel you should tell or ask the neuro, it’s so easy to forget things once you’re there.
Ben
Thanks Ben,
I will do that, it’s difficult to remember everything when you’re at an appointment. I have a few symptoms but seems to be in remission at the moment.
Hope you are doing ok.
Morning and welcome Lindylou1, I’m 54 and was diagnosed at the end of May. I seen my MS nurse last week I wrote everything thing down I wanted to ask because I knew I’d forget everything I wanted to ask. The nurse had as many questions for myself as I did for her…lol, I also took notes .she was really nice and put me at ease. She said my next appointment will be with consultant to discuss medication options. Appointments in September so not to long.
Hi Rocenante,
I hope your treatment starts soon. I also have an appointment in September with the Neurologist but I don’t have an MS nurse yet.
Hi Lindylou. Some 16-17 years ago I was diagnosed at about the same age as you. Are you on any disease modifying treatment (in my case Avonex)?
Hi Hank Dogs,
No suggestion of treatment yet. I was told by the Neurologist to phone an ambulance if my symptoms returned, and that was all the guidance I received.
I have another appointment next month where I will be asking about treatment.
How are you getting on?
Hi Lindylou 1. I’m not too bad thanks. I found the period between initial diagnosis and seeing the MS Consultant incredibly frustrating and scary - it seemed to drag on simply a result of the NHS not having enough MS Nurses and Consultants. Once on Avonex the MS seemed to stabilise and for some time, apart from the weekly injections, i sort of forgot i had MS. Some years later i found that after and hour or so of walking my right leg ‘stopped working’. It would recover after an hour or so but now and some 16-17 years later and 70 years old next summer, I struggle after 15 or so minutes of walking. I find myself using lifts rather than stairs although every now and then i will challenge myself to a couple of flights of stairs. Im sort of trying to put a bit of a 'positive ’ or certainly less than totally gloomy outlook on things but in general, my worse fears haven’t come to be (yet!). I do use a mobility scooter for longer walks and in some strange way , and having got over self conscious feelings, I actually quite enjoy using it e.g on country and park footpaths. Other symptoms: i don’t like lots of loud noises but e.g happily go to the cinema or theatre (although not the theatre since Covid reared its unwelcome presence,-theatre seats are so close together and quite often a little onthe warm side) hot weather became a bit of a problem but not until 2-3 years ago, I had to learn to watch my bladder (its not really a problem but sometimes when i need to go i do need to go. So im always keeping an eye out for the nearest toilets although Strangely enough, this seems to have improved, become less of an annoyance over the last few years and Ive never ‘had an accident’). I can sometimes get tired - fatigued in MS words - but again its not a massive problem.
Im sort of wary about saying things aren’t too bad (tempting fate!) but i am able to enjoy life - not quite to the full but its still enjoyable. I could ramble on but am more than happy to answer any questions
Hi Hank Dogs,
I’m pleased that your symptoms have stabilised, it gives a bit of hope that with some treatment it may not get as bad as I fear it might.
It’s really interesting hearing about your experience.
I’m already struggling to walk for longer than 10 minutes as my legs feel like lead weights so I need a sit down, then after another 10 minutes, I’m done for the day. Hoping some treatment may help with that.
Thanks for sharing your insights and I hope things remain manageable for you.