Probable MS, confused

New diagnosis and before diagnosis
1

Hi,

I hope everyone is doing ok…

I have written a post before and things have changed a bit but im a bit confused…

6 Weeks ago I had lots of symptoms and went to hospital for steroid for 3 days. Had lesions (not a lot) on brain and on C-spine. Lumbar bands tested positive also. Up till now a diagnosis of CIS.

On my 1st MRI the radiographer said I had some old lesions but the Neurologist never really wanted to discuss it, why might that be?

I saw Neuro last night and he said the VEP test showed up that I also have Optic Neuritis in my left eye. I have suffered 2 years with a blurry eye and eye specialist had always said it was quite unusual (we were trying pills and steroid drops to treat) but basically some veins in the back of the cornea with a haze ( a type of keratitus). In the 2 years I was pregnant then had baby so was kept busy and day to day didn’t notice the blur much as right eye compensated. It is a very good eye specialist and I am suprised that she wouldn’t have picked up on Optic Neuritus? Does anyone know if these two conditions may be similar? Otherwise it would be a massive coincidence to have both in same eye?

Anyway, hence my Neurologist sending me for VEP.

He told me last night that he thinks I therefore do have MS but sending me for MRI in 2 weeks, he said he would also speak to eye specialist but she is away for 3 weeks. She knows nothing of whats been happening and last saw her in Jan.

I wonder if anyone could explain if the fact I now have ON makes the diagnosis probably MS or just the fact it could of happened 2 years ago?

Im feeling so low and depressed today, have tried to be so positive up until now but I think its hitting me. I have so much work on plus caring for my 15 month old son Im feeling it all a bit too much,

I would really appreciate any knowledge or advice, thanks so much, Debsxxx

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Hi Debs

It is because the ON is a ‘relapse’ of inflammation. You have therefore had two episodes, therefore it is likely it is ms ( you need two relapses to be diagnosed with ms).

As far as I am aware ON is a typical ms symptom, although you can have ON, but not have ms.

Try not to worry! My ex has ms and has it very mildly, he had ON and some numbness but has been fine for ages. Me personally I have not (yet) had ON.

Kat xx

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Thanks Kat so much for your response. I get that it would be a relapse if it started 2 years ago, I guess im just queryig whether it really was ON all along or if what the eye specalist thought it was/is is similar to ON.

Its just annoying she is away for 3 weeks and cant have that dicussion with her before I next see the neurologist.

xxx

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Yes, it would, wouldn’t it? Well, time will tell.

If it the eye condition you presented with a couple of years ago turns out to have been ON all along - or ON as well as the other thing - it would greatly strengthen the case for an MS dx, that’s for sure. Separate attacks, documented by a doctor at the time, is what they look for.

What a horrid time you are having - I am very sorry.

I hope that you get to the bottom of things soon.

Alison

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Thanks Alison for the message and taking the time to write. Im mostly ok its just at times i get very low but with a history of depression I am rather used to this.

I just need to be patient and ride this time out like so many lovely souls

Have a lovely weekend

xxx

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