Hi all just after a little advice if anyone can help I was diagnosed in May with Ms my first symptom was in August 14 numbness in left side of face and some co-ordination problems I was sent for an Mri which showed a lesion on my trigeminal nerve the neurologist told me it could be Ms things improved a little, however in March I lost the ability to walk properly due to balance problems I was admitted to hospital for two weeks for more tests ,this time my Mri showed another active lesion close to the last one I was given intravenous steroids these helped a little although my balance and co-ordination is still bad and I still need to use walking sticks at all times I then had a follow up app with the neurologist who said everything else tested for was negative an that I had Ms I asked him when the problems I’m having will go away and he explained that each relapse causes residual damage and that it’s unlikely my balance will improve. He said that they won’t be giving me any medication for the Ms yet unless I have another relapse so I guess my question is “is this normal” ? If this last relapse has been this disabling for me then is it ok to wait for another which could end up leaving me worse than I already am .I have an appointment in August with an Ms specialist. Also no one has ever mentioned an Ms nurse to me should I be asking about my GP about this Many thanks
On the face of it, Tinkerbell, I would be surprised if the MS Specialist Neurologist you see in August wasn’t inclined to get you on a DMD for exactly the reasons you stated! I would want to be on one in your shoes. Your shoes are pretty much what I was in a few years ago - nasty onset, incomplete recovery etc, and I couldn’t get on a DMD fast enough. You might like to do a bit of reading up on the DMDs available, so you are well-informed for the consultation.
Of course, your medical advisors are the ones who know about your condition and are the medical experts - each of us on here only has his/her own experience to go on, and so the opinions of people like me have no standing worth a damn and are to be taken with a large pinch of salt!
Thank you for the advice Alison I’m not sure what DMD is I assume that’s for medications ? I’m defiantly going to speak to the specialist about my concerns though ,I didn’t think too much of it at first but with him saying that it leaves some permanent effects I don’t really want to wait and see what the next one will do .I’m sorry to hear your situation was similar to mine and hope your doing ok it’s quite scary how it can be that fast and that life changing ! I appreciate that it’s personal experiences on here however any advice of people is gratefully received Thank you
DMDs - disease-modifying drug (sometimes also called DMTs - disease modifying treatments). They are the drugs that actually aim to alter the course of the disease itself. They will do nothing for the relapse you have now, but should help to dodge the some of the relapse bullets lying in wait for you down the line, and also shorten and minimise the ones that do get you.
There’s a good summary on the main part of this MS Society site - see the ‘What is MS?’ tab above. The MS Society info on the main part of the site is a great source of good information that is easy to understand and reliable - both qualities sometimes in short supply on the Wild Web, as I am sure you know.
And yes, I’m doing fine, thanks. Increasingly strong DMDs over the years have helped me to keep my (rather aggressive) RRMS under some sort of control - let’s call it a score draw at half-time.
Thanks Alison I shall have a look ,that’s what I’m looking for something quite easy to understand as this is all so new to me I’m actually going to ask this specialist some questions about it though ! I’m glad to hear your doing fine and your Ms is under some sort of control thanks again for your advice