nutshell88 19/11/17
Last reply 5 months ago
Images show Active lesions

Hi lovely people

Since I was daignosed 2005 the lesions in my brain are active and in 2014 I developex an atrophy.
But my MS is calm a bit too much I get a relapse once every several years. The dye in my MRI imaging is clear not sure if its right to call my MS relapsing remelting. In the uk the dr gave it a new name primary remiting MS. But dra in saudi RRMS.
I’m off treatments since I knew MS so basically 12 years.

Do you think MS is hiding to build up till I get 40 for example ..!
I don’t believe in predicting.
I would just like to see your opinions.
And if they were based on personal experiences would be better.

Kind regards
R

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edgarleroy
5 months ago

It sounds possible that you have ongoing brain and nerve damage. Don’t waste time. Read this to see if you feel it applies to you: http://www.msbrainhealth.org/resources/for-people-with-ms/article/brain-health-a-guide-for-people-with-ms


bok2bjan
5 months ago

Hi @nutshell88 – I think you mean Progressive Relapsing? That’s the rarest form, effecting 5% where a steady progressive form will have more severe “attacks” along the way. I don’t know of a “primary remitting” form. Maybe he was trying to say it was the “usual remitting type”?

Lesions don’t stay active for prolonged periods of time. The inflammation period, when the myelin is being destroyed, then repaired in a sub par fashion, is when the lesion shows up as “active”. It’s believed that there is background inflammation occuring even when the relapses aren’t occuring. That is what explains the fact that patients continue to decline – even when the DMTs have stopped many of the relapses. And why, even with treatment, a majority of those with RRMS go on the develop SPMS.

Most MS patients have more brain atrophy than same age subjects too. This is explained by the inflammation currently not image-able with MRI. I think that’s what you were referring to when you said you developed an atrophy? The overall brain volume is diminished due to axon death – and total nerve tissue loss.

And what did you mean by the dye was clear. Was the MRI negative? Or just didn’t show active lesions? Mine haven’t shown active (enhancing) lesions for several years, but I have had a slow decline – but an acceleration of decline in the last few months. I’ve had SPMS for a few years now. But it’s hard to know exactly when you make that transition. It’s kind of made in retrospect. But if you’re progressively getting worse without active lesions – you’re in SP. Basically – the subtype call can be made looking at your clinical picture. Hope that was clearer than mud!! Blessings, Jan


bok2bjan
5 months ago

@nutshell88 – one more thing. Since you’re rarely aware of your MS – you would definitely not have the Progressive Relapsing form. So the Saudi Dr must have meant RR. But maybe you don’t really have MS? Was your MRI truly “clear”? Jan


nutshell88
5 months ago

Hi @bok2bjan
I have MS indeed since 2005 lost my sight in one eye then it returned I have relapses one every several years my life is nearly same now snd before MS healthwise people who see me never guessed anything wrong.
My english isnt perfect.
But dr in Scotland said I have as you said I guess. Altho I rarely get relapses but she asumed it after seeing atrophy in bottom right of my brain and she said it would reach the spain anytime if i kept refusing meds.
Dr in saudi said I’m still RRMS tried to make me have treatment but then she stopped.
She said nothing disturbed her vision of the MRI dye means its fine but still active. Thats
what I’ve been getting told since diagnosis
I only got two serious relapses 2005 sight 2010 vertigo its still effecting me since i still fear the stairs.
:/

Thanks for taking time to reply be safe.

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