I have had MS since 1972 but only got a definite diagnosis in 1978 after my son was born. Moved in 1980 and saw a Neurologist on a regular basis until 1988 when I was “signed off”!! At that time my MS was more or less under control. However in 2013 my body seemed to shut down an I spent two weeks in hospital unable to do anything for myself. Came home to carers, hoist, etc and a husband who was terminally ill. Since 2019 I have spent six weeks in hospital twice, each time struggling to get back to near MS normality. Last year my MS deteriorated to such an extent that I now need help with everything. Reading the various posts about DMDs (have no idea what that is) I’m wondering if you think it might be a good idea to ask to be referred to a Neurologist or whether at my age (80 next year) best to let things go. Be interested to hear what you think… Thanks so much X
In all honesty, I don’t think they’d let you have any drugs now. At 56, I’m already on the edge of the cut off for them, because the professionals feel that MS tends to stabilize between 55-65.
The DMD’s are used to try to prevent future damage, so they wouldn’t undo any of the issues you have now. They’re more for the young people. At our ages, we’re pretty much stuck with the bodies we have.
Welcome to the forum, though! I hope you stick around. We need more people in the “older and wiser” category! Sometimes I feel outnumbered by the kids on here. 
HI,
I’m surprised with your recent medical issues that you haven’t been referred to a neurologist.
Yes, I’d ask for a referral, there may be something that may help you.
Take care
Jen
Your age is not a concern from where I’m sitting - you could be around for another twenty years. Ask for the referral and if anybody says no ask why and get a written response detailing the answer. What ever you decide I wish you every best wish
Agree with the others - ask for a referral. 33 years is one heck of a long gap without any follow up.
I also agree with the others, of course you should seek a referral. In fact, I’m deeply surprised that you haven’t seen a neuro for so long, especially after being twice hospitalised. ‘Signed off’, whatever next? I’ve not had a relapse for several years but I’m called in and assessed annually, as should you be, in my opinion. Only a consultant neurologist can treat MS.
Please don’t let things go because you’re nearly eighty, I’m about a decade behind you and in your position would be demanding a referral.
Ben
You should have a referral just to talk about your concerns. Do you not have an MS nurse you should have one.
I dont see my neurologist havent seen him since 2016 when i was told i have progessive MS. but i can talk to my MS nurse every six months or if urgent i can email her. she is the one person who will listen and then if she thinks i need to talk to my neuro she makes me an appointment.
For example i have a phone call appointment with him in september about trying new drugs for pain etc.
You shouldnt just be left on your own with this. No matter how long you have had it.
DMD is a disease modifying drug, which is used to slow progression, sadly i would think its too late for you. But there are other things out there to help, like an occupational therapist or physio. I assume you had a care assessment by adult social services.
Is there something specific you would like to talk to your neuro about. I think the problem is with long term MSERS they just have nothing to offer, but you can be reassured and if your in pain etc you should be assessed.
Sorry about your husband. I lost mine 2017 and that put my PPMS into a tail spin. I went to ORTHOTICS to see about a leg brace, they kind of signed me off with SORRY YOUR TOO WEAK, nothing we can do but make you more comfortable, talk about making me feel confident i just fell flat and deflated.
so i do my own mindfulness.
Its great you have reached out to our little family for help.
BIG HUGS… wow you have had ms 49 years fair play @essie and still reaching out.
Thought that might make you laugh lol. xxx
Thanks for your kind post . Not sure about your comment of “older and wiser” - I have certainly managed to achieve a lot in my life and if I
Sorry - I got in a pickle with my fingers and pressed the wrong key! Must be an age thing!! ha ha so my post wasn’t finished. I’ll just carry on as best as I can with a smile on my face and be thankful for all my blessings. Enjoy your day - Essie