Is It MS Or Not?? Two Different Opinions


I’m new to this site so I apologise if you’ve seen this before.

I was dx’d on 18th June 2012 by 1st Consultant Neurologist, who explained the scarring on the frontal lobe & brain stem from the brain MRI scan & advised he would refer me to his colleague who specialised in MS - still not sunk in yet & I’m still in denial :frowning:

Went to the other Consultant Neurologist on 28th June 2012 who wouldn’t confirm MS & advised I needed to have a VEP test which I have in a couple of weeks time. To say I’m confused now is an understatement!

I have been off work since my symptoms began on 27th May 2012, have had MRI scans on my brain and 2 on my spine & have had the intravenous steroid injections which have helped with the majority of symptoms, although I am still suffering with fatigue & permanent back pain. Wanting to get back to work but the fatigue hits like a David Haye punch to the face hahaha!

Has this happened to anyone else? Can 1st Neurologist be wrong? If he is why would he write to the other Neurologist, copying my GP, confirming he had dx’d me with MS? Oh & my GP said I should talk to the MS Nurse - she was loads of help, as the 2nd Neurologist had written to my GP saying I had “non-conclusive MS” she said I couldn’t get an appt until it was confirmed!

Thanks for any advice - it’s nice to know that I’m not alone when I read the posts on this forum :slight_smile: Pen x

Hi Pen, Firstly, welcome to the site.

Yes very confusing for you.

As I’m sure you know, diagnosing MS can be very difficult… not one simple test but a group of tests and information that they put together to see if they can diagnose.

I think the second neuro, the MS specialist, is being very cautious to make absolutely sure that he is giving the correct diagnosis. This of course is important, as if you were misdiagnosed with MS you could be missing out on treatment that could help symptoms of whatever the condition is (and there are many conditions that have symptoms very similar to MS).

I think you should really prepare yourself for a dx of MS… with the possibility that it might, just might, be something else.

It does happen that people get a dx and then another specialist questions it. What is more common however is waiting a long time for a dx. I waited 2 years and some people on here have waited much much longer. It’s just a very complex condition and often very difficult to dx definitely.

IF it does turn out to be MS, you need to remember that it is different for every single one of us. Many people with MS continue to live life as they did before, making adjustments along the way for their symptoms. Even if MS has a greater impact, it can be dealt with and life is certainly still worth living.

For now, take the ‘one day at a time’ approach. Having a dx or not having one won’t change your symptoms. You have a good specialist who wants to be certain that the dx is correct… and is insuring that you have all of the correct tests before he will dx. That’s a good thing. Confusing for you, yes, but in the long run he is being absolutely ethical.

Good luck and hope this helps.

Pat x