My son 33 was referred to Neurologist by family doctor. He had his appointment today, we had prepared ourselves for the worse, but of course hoped the MRI was wrong. Son wanted to go in appointment himself, I felt out on a limb I could not help. I strained to hear what was being said as I sat outside doctors office. I did hear doctor say MS and just knew what my son would say when he came out. To say am devastated, crushed, feel hopeless is an understatement. My son on other hand said mum its ok, I kind of excepted neurologist to confirm it. He said don’t be upset at least they appear to have diagnosed early. But that doesn’t help how am feeling which is shit (sorry for swearing) I feel crap, my son has Aspergers as well. Its like what else is he going to have thrown at him. I know I sound selfish and there are people, far worst off but I feel so much pain for what’s to come as MS progresses. Neurologist is going to continue to see my son as he said there are two types of MS and he’s not 100% sure which one he has. Son is being referred to MS nurses can anyone tell me what happens next ? His mobility is affected balance etc and few other things. Feel so much for him when he has to walk slow for fear of falling. Sorry for all my moaning but its hard
Oh dear, I’m so sorry this post has been overlooked. You may have a much better response if you posted on Everyday Living.
I can understand how bad you’re feeling about your son, he has enough on his plate already, but try to be positive for him.
When you see an MS nurse she will explain things for you & answer any questions you may have, these nurses are worth their weight in gold. She may talk about DMD’s with you & your son, as the diagnosis is early he may very well benefit from this treatment.
MS isn’t all gloom & doom, there’s so much help available for your son…I hope the shock has abated a little, just try to take it one day at a time. You can always chat to people on here too, have a rant if it helps you feel better
Good luck, I hope my reply isn’t too late to catch you…
I was also diagnosed at around the same age (I was paralysed down my left side but everything returned to pretty much normal over 6 weeks of physio and rest after my first attack). I use to fall over a bit in those first days (once into a fish pond lol!) It was a huge shock for my family too, especially my Mum as they were in New Zealand and I was living in Jersey in the Channel Islands.
I was shocked but over time I was very glad to be diagnosed in a way as I could then consider the various DMDs offered to me and make quite a few changes in my life - like a second chance almost.
That was now 8 years ago - I know live and work in London, have had many work promotions, travelled all over the world, swim 5 times a week and box 2 times a week, got engaged and MS has really become only a side issue for me.
My Mum says to to me that she feels hopeless and useless about my MS and I know she means it too!
I began a new oral treatment (Tecfidera) last month after 7 years of a weekly injection (Avonex).
I wish your son and you all the best and know the pain you feel as I see it in my Mum when I visit.
Hi Gerard Thanks for sharing your story, how encouraging for me as mum & him as the sufferer. How wonderful you have a great life, congrats on your engagement! Us mums always feel guilty, maybe I won’t feel as bad once I see things falling into place. Thank you for your best wishes, much appreciated.
the ms nurse will be able to organise physio, occupational therapy (to check if the home is safe for your son and possibly provide small things to make it safer).
the neuro will be talking about relapsing remitting and primary progressive.
i was told the same but turned out to be relapsing remitting.
your son is correct in saying that you shouldnt worry because they found out early.
he is also young and the ms specialist neuros are really keen to help.
hopefully he will be offered one of the heavy duty DMDS
just be there to listen to him and give mum cuddles!
Thanks Carole for your reply. Can I ask what DMDS is ? xx
Disease modifying drugs. Just in case carole doesn’t notice
Thank you Blossom x