Hi im pam, And i was recently diagnosed in March after my right leg went numb. I have my first consultation with Oxford neurology on April 30th and i hope to learn a lot more about my condition then.
2 Likes
@pamglazer Hi Pam, sorry to hear of your recent diagnosis. Hopefully after your consultation you will know what type of MS you have and what drug options are available to you. I should imagine you will also be referred to the MS nurses who can be a friendly and knowledgeable help to you. Start thinking of questions in advance and also any symptoms you might have had (other than your leg) previous to your diagnosis i.e I didnāt realize my bladder problems were related to MS and ask at the appointment.
2 Likes
Hi Pam
Sorry to hear of your diagnosis. Theyāre a good mob at neurology in Oxford (I was in the John Radcliffe for a few of weeks) - Iām sure theyāll look after you well. Good luck with your appointment. Let us know how you get on 
Take care and, good luck 
x
Jon.
1 Like
Hello Pam, Iām Graeme.
Iām 63, diagnosed for 5 years but realistically can trace back āissuesā for 10 years before that - including leg numbness. Perhaps in hindsight you can point to some issues, injuries or whatever that might have been around earlier?
Iād say donāt wait until 30th April for all to be revealed. Read every resource you can get your hands on between now and then so you can go in, armed with questions! Some good stuff in MS Society and also in MS Trust. MS Trust also do a useful series of podcasts. Try:
and potentially the most useful for the next week: I am newly diagnosed with MS, what happens next for me? - Pocket Casts
3 Likes
Thank you Cavworld, GCCK and jthatcher for these kind and helpful responses to my post. All good advice ahead of my appointment on 30th. Iām sure Iāll have some questions following from that and will be posting again for sure. In the meantime, Iāll get on with preparations for my appointment. Many thanks 
2 Likes
Hi Pam. I hope youāre keeping well
How did your appointment go on Thursday?
All the best x
Jon.
Thanks for asking Jon The appointment lasted an hour and was very thorough. The consultant asked about past symptoms - most recent and then also the last 15 years - and then gave me a thorough physical assessment. She confirmed MS diagnosis as suggested by head and spine MRIs from March, which is the one point in time we currently have. We discussed some possible DMTs and all of that will be in a letter to my GP. Next step will be a phone call from the MS nurses.
So, Iām in the system now and we tak it from here!
How are you doing today?
Best, Pam
3 Likes
That all sounds like good news Pam. Iām glad that your meeting went well
I hope your MS nurse is as nice as mine
Iām ok, thank you - just a bit achy after helping my daughter move over the last couple of days but, itās all done now and she seems happy.
I hope you have a good bank holiday x
Jon.
Thanks Jon. Yes, all very nice so far. It was my 64th birthday yesterday so we had lunch out on a lovely day in Oxford. Getting the Park&Ride home to North Oxfordshire was a bit tough but we managed even with full buses. I was offered an accessible seat - first time Iāve used one but I felt it was rightā¦ I was getting very hot and fatigued! Now -well, since March- I know why.
Taking it easy today and itās raining as we expect on a bank holiday 
2 Likes
Happy Birthday Pam 
Lunch out in Oxford does sound nice
Take care mate x
Jon.
I just thought Pam - as youāre in North Oxfordshire, are they putting you in touch with the team at GWH in Swindon?
Jon.
I should imagine Iāll be with Oxfordshire as my consultant is at the John Radcliffe. Itās quite a bit closer than Swindon - 40mins rather than 1.5 hours.
Pam
1 Like
Hi Pam,
Sorry to hear of your diagnosis, but Iām glad your neurologist appointment went well.
And a belated happy birthday!
How are you doing now?
You might like to look on the MS Society website to see if there is a local group. Mine are fab and have lots of socials and a weekly MS adapted Pilates class amongst other things. The people have been really kind and friendly and welcoming. Itās not all about MS, but itās good to be with people who āget itā.
Wishing you well,
Alison
1 Like
Thanks Alison. Iām doing ok thank you and will see my GP this week for the follow-up appointment. There is a local MS group that meets once a month. I plan to get to it this week, all being well. Iām also waiting for a call from the MS nursing group. I may take the initiative and phone them myself tomorrow to try and get the ball rolling. I have a diagnosis of RRMS, probably starting about 14 years ago when I was 50ā¦ With the benefit of hindsight, it seems obvious that I should have been investigated for MS sooner. But Iām relieved to be starting to know now what I am dealing with - better late than never, I suppose!
Take care,
Pam
3 Likes
Hi fellow travellers,
Iāve just had a phone call from my neurologist. Iām newly diagnosed at age 64. She and her colleagues have said I shouldnāt have DMT as itās unlikely I still have active inflammation after a likely disease history of 15 or so years.
She diagnosed RRMS but thinks Iām very likely on the ācuspā of SPMS.
They have only 1 datapoint - my brain/spine MRIs of March 2026.
Her advice: have another MRI in 6 months and see whether inflammation is still active.
Donāt take DMT in the meantime because of being immune-suppressed.
My thought: take the DMT straight away in case it is having a positive effect even if itās small.
Does anyone have any thoughts on this?
Thanks,
Pam x
2 Likes
@pamglazer Absolutely agree with you that you should have been offered a DMT of some sorts. There really isnāt enough research on the over 50s with regards to progress etc.
I have tagged @Hank_Dogs into this, as he has recently developed a new lesion at 72 (hope I have remembered that correctly) so its still entirely possible that it can still happen.
3 Likes
I was also diagnosed later in life. Iām now 62 and developed a new lesion at 60.
My neuro thinks Iāve had MS for years.
Please push for a DMT you need to protect yourself.
Iām on Copaxone which is a pretty ineffective treatment as my neuro didnāt want me to be immune compromised.
Over the past 12mths Iāve developed even more difficult symptoms.
Iām due to have another MRI of my brain and thoracic spine in June.
If there is any suggestion of a further new lesion I will be shouting for a more effective treatment.
You really do need to advocate for yourself .
Take care and good luck with finding an effective treatment as soon as possible.
2 Likes
Hi @pamglazer my thoughts are very much that you should push for a DMT ! There is a saying amongst part of the MS neurologist community that when it comes to MS and treatment ātime is brainā or something like that - meaning that delaying treatment means real risk of damage/ lesions on your brain! Why wait to see if the patient (you) are going to get further damage and possible/ probable associated disabilities??
if your MS team are really reluctant because of possible weakening of you immune system then argue for one of the older treatments which have less impact on the immune system. Not at all ideal and goes against contemporary thinking about āhitting MS early and hardā!
As @Cavworld says, I had a new lesion when I was 71! My MS Nurse and Neurologist seem quite happy to keep me on my DMT - One of the earlier and least effective ones. Been on it for a little under 19 years and other than one episode of Covid a few years ago I think that overall Iāve had fewer colds, flu than before. Mind you that could be because I do take care to avoid crowded busy places in the winter , high flu etc season.
2 Likes
I too would need some convincing that a case with so many ālikelyā 'very likely and āprobableā words in it added up to a clear conclusion that I would not benefit from a dmd. Seems to me it could just as readily have gone the other way, and that wouldnāt have been a sure thing either. In cases where it could go either way, it would be nice to think that there was room for patient preference. You mention being immune-suppressed - is that another treatment or history of treatment or are they just talking about your (and my!) immune system getting a bit senile?
2 Likes
Thanks Cavworld. Iāll go back to my neurologist and argue for a DMT.
2 Likes