So why have I been diagnosed incorrectly ?

Just over a year ago I was diagnosed with RRMS. 9 months later that was changed to PPMS. Now they have admitted they`re unsure. So why diagnose me incorrectly in the first place. If they were unsure why not say so. Is it to save on paperwork?

This Saturday I have another MRI on the brain to hopefully give a confirmed diagnosis. I know it`s difficult to pinpoint the diagnosis but be honest with me. It is my life after all.

To say I`m nervous is an understatement.

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What a confusing business. Because RRMS is more common then PPMS, might they be inclined to assume RRMS even if the picture doesn’t quite fit? Knowing that time will probably tell in any case? Goodness knows. Anyway I hope you get some clarity soon, and that the news is as good as it can be.


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Hey Scudger,

Just luv your animations.

As far as what you have ask Poll; she was PPMS and other things; now they have ended up with HSP some 10 years later.

Many moons ago they used to have the 5 year confirmation. Meaning they cannot tell what type of MS you have till they have 5 years of history.

If it is continuous; no attack and remission it must be PPMS. Attack/Remission must be RRMS.

Then you get people like Poll and me; I’ve only had one attack; 44 years ago; still much the same.

I pity them; Neurology is not a definite science; their groping in the dark; don’t know their base from the apex.



Cheers George.

Knowing what I know now due to my original diagnosis. I feel I have had certain symptoms for 25 - 30 years. Just funny moments that you can`t explain and that was that. I just put it down to pushing myself doing sports and the ageing process.

Ive never had a relapse (I dont think I have). I feel better now than I did a year ago. I have taken supplements and adjusted my food intake since my diagnosis.

My main symptom is fatigue but even that is up and down from day to day.

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Hi Scud!

As George says, my rocky road to diagnosis must’ve been guided by the worst satnav ever!! It still ain’t sorted!

I presented very typically with PPMS and my mobility deteriorated rapidly.

From 1998 to 2003 I was highly suspected of having PPMS. Then I was given a dx of it for a further 7 years.

A new neuro decided it was MS at all, but HSP.

HSP usually just affects mobility, bladder and bowels and fatigue is bad too.

What’s your mobility like?


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Hi Polls

my mobility is very good. Bladder, bowels, dizziness and balance have improved over the last year since my MS diagnosis. I take supplements and have adjusted my diet. Worst symptom is fatigue. Just got no energy doing manual jobs yet I can go on my indoor exercise bike flat out all day long.

I have great difficulty sleeping but even with that I have good and bad nights.

I dont know what I have and Im bored of it. I hope they can find an answer for me.