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Is this really progress

For over three years a friends daughter had distinct m.s. symptoms - frequent visits to GP who fobbed her off assuring her things would improve - which they usually did.

A fortnight ago after she ws finally referred to a neuro who dx’d her woith m.s.

Asking about DMD’s she was told she didn’t qualify as her m.s. was in the secondary progressive stage.

She has been badly let down by the medics.

I wonder how many others are turning up at their g.p. and not being referred to a neuro until it’s too late?

hello

secondary progressive (spms) follows a period of time with relapsing remitting ms (rrms).

your friend’s daughter may have unknowingly had rrms for years.

she should have been introduced to her ms nurse though.

the nurse can help with lots of things such as referrals to physiotherapy, occupational therapy etc.

to be honest 3 years sounds a normal length of time before it is understood what the problem is.

i was extremely lucky to have a very forward thinking GP who referred me to a wonderful neurologist.

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The trouble is that often people don’t necessarily present with symptoms that ‘look’ like MS, so they get missed. Other times, people have what looks like MS, but isn’t.

MS can be quite tricky to diagnose, which is why there are so many people on the newly/un-diagnosed forum in what we call ‘Limbo’.

So while it seems she’s missed the boat for DMDs, at least each time she’s relapsed, she made a good recovery. That could be seen as a good thing as she’s not lived the last 3 years ‘with MS’. What I mean by that is she’s lived a normal happy life, albeit with times when she’s had relapses. I had 5 years when I was having relapses but had been wrongly told I didn’t have MS. When I found out the truth, that the doctors had made an actual outright decision not to mention MS to me, initially I was furious, but later saw it as a reprieve. I’d had a few more years of living without the worry of an MS diagnosis.

Hopefully now she’s free of potentially disabling relapses, she’ll reach a kind of plateau where nothing much changes.

Sue

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I had optic neuritis in 1998 and it recurred a couple of times a year. I had various other symptoms which, looking back, were probably MS. In the end I was diagnosed in 2007 and by then it was SPMS. In some ways I wish it’d been diagnosed earlier so that I could have benefited from DMDs but on the other hand I had a lot of years without that diagnosis hanging over me. I don’t feel that I was let down by my GP, all of my symptoms could have been caused by other things. When I fell into the road when pushing my son in his pushchair my GP asked if I’d had problems with my eyes and, because I had, that finally set off the alarm bells. It’s a hard disease to diagnose but I hope your friend’s daughter can now get any help that she needs.

Becky

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I am sceptical that “DMDs” do anything at all!

I had 8 years on them and still progressed to SPMS. So I wouldn’t bother feeling hurt or upset

about not having them. Many folk have awful side effects on “DMDs” or even die!

They are not a cure and rather horrible.

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I’ve been on Tecfidera for a couple of years but the medics seem to think that it is causing low white blood cells. Given my time over I would not have started it. But without it my MS would have progressed in a different way? Life is full of tough decisions. Let’s have a glass of Pinot Noir.