Hi, I’m a triple M (ME, Menopause and now MS). Just diagnosed with the latter given MRI lesions in brain, neck and SPINE, after a lifetime working from home with ME. Dad had ME then Parkinsons. His mum had MS. Interested in hearing from anyone with a late-onset like me who feels able to offer encouragement, hope and any advice. Been struggling with lower mood, more anxiety and increased cognitive problems since mid 40s. Thought it was ‘just’ perimenopause but now not so sure. Used to living with low energy and lifelong glandular fever symptoms (Epstein Barr triggered me ME at 18). However, this is a new ballgame and am guessing more likely PPMS than RR given my age and subtler symptoms (neck pain, little sensation in hands, poor balance and coordination, urgency when need to pee… And peculiar sensation of walking heavy on the backs of my heels). Can anyone relate? I live in Spain and wonder how many years I’ll get til I can no longer work and have to return to the UK and apply for benefits. I teach languages and love it. Feel so sorry for my boyfriend. I keep distracted during the day but am more tearful and scared at night. Currently on short course of steroids (prednisolene) for neck inflammation. Sorry for information overload but I know from my days supporting people newly diagnosed with ME that some of you will be veterans who can act as an emotional lighthouse for folk like me. Any insights gratefully received.
Important not to guess or rely on Dr Google. Although diagnosed at 62 and male (people would have automatically said PPMS) it became very clear it was Relapsing Remitting. I had put my symptoms down to reduced activity and getting older.
Other people may have advise on the Spanish health system. I assume you know the basics but someone may be able to enlighten you on how they deal with MS.
It is impossible to predict where your MS will go, but we can only try to keep as active as we can and engaged with outside activities. Eat well, don’t smoke, don’t drink (too much). I know a lady in her 80s who is as bright as a button who has had MS for over 30 years.
hi, i began with ppms symptoms at 45…not diagnosed till 22yrs later. 70 now.
rely on hubby and carers for most things.
in wheelchair 20 yrs…but you know who gets me through…Jesus.my saviour and friend.
are you a believer
boudsx
Thank you so much. You have made my day. I don’t smoke and eat very healthily. I can’t exercise much as pretty weak from the chronic fatigue but try to walk and do a little yoga at home. How long have you had MS and what are your symptoms? As long as I can keep working, I’ll be so grateful as I love teaching and it’s really good therapy for my brain. Did you get early retirement? Glad you gave RR and hoping I do too. My symptoms are mild apart from the mood problems but they may be menopausal which is temporary. This might turn out to be a good thing for me as I’m now more motivated to stay in the moment, meditate more often and truly appreciate the beauty of our surroundings. It’s just at night that it overwhelms me, when I’m more tired and as it’s so new. Thank you again, 62!
I was already retired and grateful it was just the bucket list that was ditched.
My main symptoms were mobility and falling over. Made a good recovery from initial hospitalisation when I was diagnosed. Looking back could see things for a few years before.
Concentrate on what you can do and not regret those you can’t.
If you need an aid embrace it early as a tool that helps you to do the things you want. If you do this you can choose to only use them some days. If you wait too long you will have lost condition and become immediately dependent on them.
I am now 5 and a bit years in. For me it is the needing to plan more rather than just going for it. I knew someone who had MS for 30 years so had someone to compare notes with and have built up friendships through exercise classes. Again useful to exchange ideas.
MS is not good news but it is not the end of the world.