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Vision problems

Hi

As I’m sure everyone else does I have been in the process of being diagnosed for nearly 3 yrs now. My neurologist and GP have both said they believe I have MS. Then things get more tricky.

So my GP says he cannot understand after all my tests and results why I have not been officially diagnosed. The neurologist says I fulfil the McDonalds criteria (I think that’s what it’s called?) but would like to watch and wait. So 6months on I have have my third optic neuritis (diagnosed by the hospitals opthamolgist ) I’ve had some other bits and bobs going on aswell but I never know if it is just a normal something or a potential MS something!

Does anyone think this may be enough to finally get a diagnosis either way? If not does anyone know what the neurologist could be watching and waiting for?

I look forward to hearing your ideas

Hi Sammy

That sounds a bit crap to me.

Either you fulfil the McDonald Criteria, in which case you have MS, or you don’t.

I have no idea what your neurologist is watching and waiting for. If you’ve had more than one relapse, and have the appropriate boxes ticked for McDonald to apply, then waiting is pointless.

Why don’t you try writing to the neuro and asking what you’re waiting for?

In the time you are ‘watching and waiting’, you’re running the risk of more relapses and therefore more nerve damage.

It seems to me that you have active inflammatory behaviour going on and could do with being on a DMD. Thereby hoping to prevent some of these relapses.

Sue

Watching and waiting is all very well (I did a bit of that myself after my first attack of what turned out, to no one’s surprise, to be MS). But you say you have had three separate bouts of ON? Three?! And you meet the MS dx criteria, but no dx? No wonder your GP is perplexed.

Of course, your neurologist knows you and your condition and is the expert here, but still … OK, TBH I think you, with the GP’s help, perhaps, need to put your foot down and make it clear to the neurologist that you are not happy with this situation and that, if you have MS, you need to know so that you can work with your medical advisors to help you stay as well as you can and limit the damage. At the end of the day, it’s your vision, not your neurologist’s, that is at stake here, and a lot more besides.

If a destructive disease process was at work that had decided that my optic nerves were particularly tasty, and had indicated that it would be back for another nibble if given the chance, I would want to do something about that, and fast. Time to get assertive, I think.

Alison

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