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@EEG 

Last reply

EEG

Hello, new here and in need of a moan...

Just wanted to post something to introduce myself. Diagnosed RRMS in 2017 but experiencing symptoms since around 2010. Never really accepted it but after a second opinion last month, I may finally have to. Awaiting another MRI after which Neurologist will decide if I should start DMD's or not. Given that drugs can't do anything for damage already done, it feels a bit like closing the stable door after the horse has bolted! I know there's an argument for taking DMD's in order to prevent or slow further relapses, but you could be taking these drugs and having to cope with side effects but not know if they are actually doing any good or not.... my brain has a hard time comprehending the sense in that. Apart from the vision problems, extreme fatigue and nerve pain, I am finding the effect on my mental health hardest to cope with. After being told the importance of keeping stress to a minimum and looking after one's mentall health, I find there is no MH professional attached to the MS team I am with. It's all very well focussing on the physical aspects of MS and treatments, but not much good if the psychological side is ignored and ends up killing you first!
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@StephZ
@StephZ
 

Hi @eeg this report might help you to make sense of DMD and why the recommendation is to take it early https://www.msbrainhealth.org/report regular MRIs and self-monitoring will show if the meds are working as the plan is to have No Evidence of Disease Activity (NEDA) and some of the DMD don’t have horrible side effects - I started Tecfidera in Jan 2018 (~1 year after dx) and last MRI came back with no new lesions...

@Vixen
@Vixen
 

Hello @eeg and welcome; there does seem to be somewhat of a delay in your consultations/appointments compared with the usual pattern. You could try self-referring for counselling to help out; I think the MS Society keep a directory of counsellors if your GP can't help. I take a DMD but there is nothing to test the efficacy, compared with not taking it, it really does come down to personal choice. for me personally, sites like these can go some way to helping you feel connected, and can be an invaluable source of support and advice. In the meantime, you might have to make a pest of yourself and keep calling the neuro department to chase up your MRI and follow-up. Good luck, the Shift force is with you....