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what's the point of being diagnosed??

What is the point of being diagnosed? I am in limboland but even if I was diagnosed what would change?

Apart from peace of mind and access to a MS nurse, there’s no drugs that can cure or stop this horrible disease so why are we so desperate to be diagnosed? I am hoping someone will tell me there is amazing drugs that make you feel totally normal again, my neuro said the drugs have some really horrible side effects!

Sorry to be so negative, just really down at mo and wondering ‘whats the point’, what difference would it make anyway?

It does make a difference, so it’s worth pursuing. Some examples:

  • possible access to disease modifying drugs: they aren’t a cure, but they do reduce the number of relapses that people have, the severity of the ones that they still get, and delay and reduce disability.

  • easier access to meds for symptoms: unless you have a really supportive GP, getting meds can be hard if you aren’t diagnosed

  • easier access to therapy & support generally: PCTs don’t generally like funding treatment for undiagnosed conditions and (although it’s wrong) medical professionals and associated professionals (e.g. occupational therapy) take you more seriously if you have a label

  • it’s easier to explain your symptoms to people!

  • you are protected by The Equality Act

  • you are more likely to get DLA / ESA if you have a diagnosis

There are bound to be others too. Ultimately, however, the best thing about having a diagnosis is knowing what’s wrong.

Of course, this assumes that someone really does have MS. Pursuing an MS diagnosis when it isn’t MS would be a terrible waste of time and energy, never mind miss the opportunity to potentially get cured for what is wrong!

Overall, in my opinion, a diagnosis is well worth fighting for. But I don’t know if I would feel that way if I’d been in limbo for years.

Karen x

Hi Vicky

I felt the same when I was diagnosed RRMS 26 years ago. At that time there were no DMDs or MS nurses so things have moved on a bit. I think it is quite a fine line whether getting a diagnosis is good or bad, especially if you are fairly mildly affected and still working. I expect it is good to have a diagnosis if you may be elligible for DMDs. I am lucky as my GP is quite knowlegable about MS and has always been helpful and supportive. Recently I have been seeing a good ms nurse and she told me about this site. Ideally I would have liked to be left to get on with it for another 10 to 15 years before being given the diagnosis.

Carol

Hi Vicky, Karen and Carol

This is a really interesting post. I have been weighing up whether to go for an LP or not and my thought process was similar to yours Vicky in that I wasn’t sure what I would gain from a diagnosis if it was MS as the neuro said he wouldn’t put me on any meds the last time I saw him.

You guys have made some really valid points regarding access to medical help and jobs but also weighing up the severity of your symptoms.

Thank you for the great post and comments. Reading about diagnosis and options is completely different to getting an insight from guys like you who’ve been there.

Rima

X

Hi Vicky, Karen and Carol

This is a really interesting post. I have been weighing up whether to go for an LP or not and my thought process was similar to yours Vicky in that I wasn’t sure what I would gain from a diagnosis if it was MS as the neuro said he wouldn’t put me on any meds the last time I saw him.

You guys have made some really valid points regarding access to medical help and jobs but also weighing up the severity of your symptoms.

Thank you for the great post and comments. Reading about diagnosis and options is completely different to getting an insight from guys like you who’ve been there.

Rima

X

hi vicky

i was dx with ms on the 8th march and must admit that after 16 months of waiting i’ve got the dx that i knew i had so now i’ll take whatever meds i can get and it will let me get on with my life as before my dx it was always on my mind but now i feel better knowing what i’ve got…

take care

baz

Hi, I was just dx on Friday! I had a year in Limbo, struggled financially and worried sick about my kids. Now I know the problem, it’s not going to kill me…a tumour would have! I’ll be aware of my symptoms and can take steps to lessen their severity. I suppose it’s about personality but I’d rather be knowledgeable than in Limbo. Chis

I agree with Chis. The stress of limbo land is a killer. It’s much better the devil you know… Teresa xx