@kersh100 

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kersh100

RRMS Never Been Offered DMD’s

Just puzzled... diagnosed 2014 at 54 after a chronic idiopathic event left me virtually paralysed from the chest down 2 days after arriving in Oz. Had to abandon my new life and come home to UK. I’ve had on average 1 Neuro appointment a year. I’ve suffered various symptoms like all of us but find myself getting slowly worse especially when stressed, that’s a big impact. But I’ve never been offered any DMD’s Never had another MRI and I phoned the MS nurse for the first time about 2 months ago with what I thought was a relapse still waiting for my follow up call (I know there’s a pandemic). I take Gabapentin (900Mg a day) for neuropathic pain in my hands and leg from the first attack 6 years ago. I feel a bit forgotten 😢. Should I be pushing for an assessment and further treatment? I see all these studies and potential benefits from DMD’s but I feel completely left behind.
@Bing15

Yes definitely push to be seen, a few years back I realised it had been 18 months and I’d not heard from the ms nurse/ hospital, when I phoned the hospital they admitted id been lost off the list. all the best to you choosing the right dmd for yourself.

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@Vixen

Hello @kersh100. That does seem a little off to me. To be honest, DMDs are not always suitable for everyone, depending on the type of MS. But if not DMD fits your story, then you should have been told. Also, in 2014, DMDs weren't available at all for PPMS or SPMS and now they are, which shows how quickly research is developing. Where in the UK are you? Your story doesn't fit the usual approach. The trouble with us folks is that we have to push and fight for everything. You are entitled to be seen at the hospital of your choice, so you get get your GP to refer you. And if you have the energy, you could maybe ask your hospital to give you reasons - in writing - as to why you aren't considered a suitable candidate for a DMD (since 2014). Good luck, keep pushing...... :-)