Devic's Disease

Everyday living
1

Hi, I wander if someone could offer some advice.

I was initially diagnosed with MS 5 years ago and since then have had 5 recorded relapses of ON. I know that relapses on the optic nerve are fairly rare but they do happen so wasn’t really overly concerned as I always recovered quite quickly. My MS Nurse has now suggested that the time is right to go onto DMT so was refered back to my Neuro.

My Neuro agreed the time is right so sent me off for a mountain of blood tests - pretty sure you dont give that much when you donate blood - including one for Aquaporin 4 antibodies which I had never heard of so made the fatal mistake of Googling it.

It appears that if you have this antibody then it is very likely that you may have Devic’s Disease which is similar to MS in that it strips the myelin but only affects the optic nerve and spinal cord and has a very poor prognosis compared to MS.

As the many of the symptoms are the same as those for MS its very hard to diagnose and many people are said to have MS until its proved otherwise.

I only had my blood tests 4 days ago but I’ve already recieved appointments to go back to my MS Nurse and for an MRI scan - all within the next 8 days which I feel is a little strange not to say quick.

Should I be worried or take the wife’s advice and wait and see? I always look at the cup as being half empty therfore if its actually full it’s a bonus but if it’s empty I’m not to disappointed.

Having spent the last 5 years trying to make a friend out of MS I’m not sure how it would be to suddenly be told that I don’t have MS but a new condition that would change my life even more than I’m already prepared for.

Has anyone heard of Devic’s disease or know of anyone that has been diagnosed with it as I really want to get as much info as I can before my appointment next week.

Thanks

2

Hi Andy

The internet is a fantastic thing isn’t it, but perhaps the worst of it is Dr Google it does nothing but build anxiety and stress in my opinion. Do as your wife says (like all us blokes should) and wait for the results, additional tests are done more for the need to eliminate in aid of finding the correct diagnoses.

Best of luck with this new leg of your journey and try as hard as you can not to visit Dr Google

All the best

PD (Paul)

1 Like
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Hi after my mri in april my neuro was convinced i had devics disease so had bloods and a lumbar puncture within days it came back ms so was started on tysabri

4

Hi Andy,

Were you told how long it would take for the results to come back? As far as I know, the bloods are sent to Oxford and it takes a while for the results to come back. I was told it could take months and I think mine were about 6 weeks in the end. Your neuro will just want to rule Devic’s (NMO) out before starting you on DMDs, as treatment is completely different. As Paul has said, try not to google, just wait and see what your MS nurse has to say. Maybe the appointments have come through quickly, as it’s holiday time and they’ve had cancellations?

Fizzy x

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Hello Andy. Take your good wife’s advice and wait and see :slight_smile: I have heard of Devic’s disease. Try not to worry…it’s not easy I know :slight_smile: Your Neuro is looking after you well. Good luck x