Hi, I am new to the forum. I was diagnosed, I think 10 years ago. I have RRMS. I am an awful patient for the MS team. I lost my Mum to cancer and dementia 2 years ago. My youngest son was diagnosed with IIH, 5 years ago and had to have emergency shunt surgery. He is now under care of a Neurology team at another hospital.
So I have not had time to worry about myself in a very long time. I have 6 children, two are autistic or ADHD or both. So life has been hectic to say the least.
This year MS has hit me hard, I have felt very unwell and actually went to see the MS nurse instead of virtual appointments. I sat and cried and told her all my woes. My 2 grown up daughters were with me for support.
I have a meeting next week with the neurologist to decide which DMT I should take. After my last experience with rebif and copaxone, I can’t say I am too happy about taking anything. All I know is they are talking about infusions. I have had a look today at the ones they have listed. I see PML possibility and also Cancer. So I am very hesitant. I have too many depending on me to be useless to them.
It’s a difficult dilemma: to take a DMT with some known risks or not? I was diagnosed with RRMS 18-19 years ago and I’ve been taking Avonex ( an early and not one of the most effective DMTs) since then. I was fine with MS for around 8 years but then began experiencing walking difficulties and now I’m pretty much restricted to 10-15 minutes with a stick. Even Avonex carries risks ( potential heart failure being one) but I do think that without it or any other DMT I could have become pretty much totally immobile (wheel chair bound ) years ago . Would I have taken one of the more recent and more effective DMTs if they had been available 19 years ago? I’m sure I would have done
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If MS came with the patient information leaflet it would say: ‘high risk of becoming blind, crippled, incontinent and cognitively impaired and unable to work or look after yourself never mind your family.’
Those are the risks that you have to measure the risks of the DMT against. The risks of poorly controlled MS have always scared the willies out of me and with good reason because I’ve experienced what it can do Personally in comparison to that I find the modest risks of DMT‘s are a bargain. But it’s a very personal decision and the important thing is feeling that you’re making the right decision for you.
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I suppose I have had fairly mild symptoms, not really that debilitating since my diagnosis. It has affected my left side and I am left handed with neuropathy. I do have trips and falls not entirely sure how they happen, twice down the stairs. The MS hug comes and goes. I just tolerate and ignore the neuropathy. Having children, it has always been a case of I just get on with it. If I am fatigued, I sleep while they are at school. I have always felt like a fake saying I have MS but the MRI shows multiple lesions and quite a lot more recently. My fathers cousin had MS and he was wheelchair bound from his early 30s and had to blow on a stick to move it, probably one of my earliest memories of him and being scared and fascinated. I have been very emotional the last few days about this.
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I should add the first DMTs I took and I think the lack of support and understanding left me feeling suicidal, I was in a very bad place and I don’t want to go back there hence my reluctance to taking them again x
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It is often the case that we are faced with these decisions at a time when we’re already feeling battered and bruised by bad news about the worsening of our MS. That’s a nasty combination and I really feel for you.
Hi Debs, I do think that if I were you I would definitely go for a DMT. Two falls down stairs and quite a few new lesions ( falls down stairs can be fatal or certainly leave you with broken limbs or a broken neck!). The last thing I would want is to have to rely on my children as carers