Forum

HAS THIS HAPPENED TO ANYONE, FEEL CONFUSED

Morning everyone, firstly sorry to go anon, only because not sure how I feel, anyway I've been DX with MS for 5yrs now, in the last couple of yrs even told was now SPMS, well last week went to see a new Neuro, really nice chap, as he was reading through my records he asked was I given a DX of MS, so I told him what had gone on, he then went on to study my mri scans, which I did along side him, then he started to ask me questions about my first syptoms, examined me, when he asked me to stand with my feet together fell over, which he then said you have got problems, yes I no that I said, anyway I asked the question, don't you think this is MS, no I'm not saying that he replied, it's just that other conditions can mimic MS, well I knew that, because I have already been tested for Lupus and Lymes, he wants me to have another mri scan this time on my spine as well, and also blood test for NMO antibodies, now I looked this up, and this is just as bad as MS, but this can affect you're breathing, now as it happens I've been suffering with my breathing on and off for quite some time, and more so just lately, I did ask the question, if there was a Q mark over MS why had I been told that it was now SPMS, his replie, you're Neuro must have thought that at the time, I'm really sorry for the long post, I really don't know how I feel, I'm I over reacting, has this happened to any one else when they've seen a new Neuro, thank you for reading this, and hope fully replieing , Anon x  confused

Hi,

 

I hadn't seen a neuro for over 2 years.I was diagnosed in 2006 but had symptoms since 1997.I had a relapse this summer and consulted a new neuro.I had a brain and spinal MRI.He mentioned this NMO as I have had optic neuritis 3 times and also spinal lesions-which I think is why he thought it might be NMO.I had a blood test for NMO which was negative.I also have brain lesions (over 20)-don't know if you get this with NMO.

I did find it strange that my MS diagnosis was maybe in doubt,but I do trust his judgement.Anyway turns out it's still MS.

 

Hope this is of some help to you and hope you get some answers soon.

Brenda x

You are not over-reacting at all. When we get a diagnosis we might not jump for joy but at least we know the devil we are dealing with!!! And then you get used to it. Having MS isn't such a shock anymore and becomes part of our daily lives. It's easy then to say "I have MS".

Then suddenly out of the blue a neuro questions that diagnosis. Would send anyone into a spin!!!

You really have my sympathy... but you know in the end it will probably turn out to be MS anyway. You will not be the first person on this board who has had the diagnosis questioned and then in the end they are told they have MS.

Take care and try not to worry...

Pat x

What a confusing, frustrating thing to go through! I did read not that long ago that there is a lot of confusion between MS and NMO and that quite a lot of people have probably been wrongly diagnosed - I guess a lot of neuros are double checking and you've got stuck in the fall out from that :-( 

 

NMO is classically a spine and optical condition, but the longer someone has it, the more likely they are to have brain lesions too so it gets harder to tell the difference between NMO and MS from the MRI results. The latest McDonald diagnostic criteria for MS say that NMO should be considered in

- people with lesions in their spinal cord that are longer than 3 vertebrae and are mainly in the middle of the spinal cord

- optic neuritis in both eyes that is severe or that is due to a swollen optic nerve, a lesion where the optic nerves cross or they have a poor area of vision above or below the horizontal line

- people who have had non stop hiccoughs or nausea/vomiting for more than 2 days and who have a lesion in a particular place in the brainstem (seen on MRI).

 

If any of this sounds familiar, then it's good that the neuro is checking - it's important to get the right diagnosis because NMO and MS respond differently to different meds.

The NMO blood test isn't 100% accurate, but spinal MRI and the test together should make things clear. Hopefully very soon, so you don't have to be in limbo for very long at all!

Karen x

Hi, since doing my original post my GP has told me that there are more lesions on the brain scan, she is convinced that this is MS, and when I read all the letter's I've had from the 2 Neuro's I've seen, including the one with my original DX they all say MS, now I go back to see the Neuro in Q in June, so I will have one or two things to say to him, because since then my symptoms have got a little worse, I'm really sorry you're confused, it would appear most of us are, go to see you're GP about you're urine infections, take good care, Jean x

Join the 'crowd'. We know but will love you just the same.

Marcus. x.