I'm confused

Hi everyone. I wondered if you could help me. I was diagnosed with MS back in December, have just had another MRI to compare with my October one and am due to meet the nurse on Thurs. I’ve yet to be diagnosed with which type I have (though my instinct/hope is RRMS) I’m wondering about how the Neurologist (who I am due to see next in Sep) can confidently label which type I have in terms of starting a DMD. Obviously she will review and compare the MRI’s, but in terms of questioning me, I’m not sure if I can safely say that a lot of my symptoms have ever gone into remission (I’m guessing fatigue, tiredness, pins and needles etc could be a constant?) I don’t know if a ‘remission’ refers to a total disappearance of a symptom or an easing of it? Or how long it should last to be classed as a ‘remission’. Apologies for my vagueness…

I have RRMS but, although my main problems of mobility and fatigue etc do ease slightly sometimes they are always there and pretty much the same. When I had a catastrophic relapse that led to my diagnosis, I had speech problems as well as being virtually unable to walk. The speech problems cleared up completely after a couple of months and hasn’t returned. Bouts of Optic Neuritis have come and gone in a matter of days/weeks. MS really is the gift that keeps on giving!

hi zoe

my first symptoms of tingling, numb feet are still with me.

the fatigue is another constant.

and my spectacular falls too.

boblatina is right in saying that ms is the gift that keeps on giving.

just tell the neuro how it is for you and he will make his decision based on that and your MRI.

good luck

carole x

Hello Zoe!!! I ran up my 20th year after dx last year, so it’s not all doom and gloom. I got dx after I left uni. I hide it quite well still! Two camps, no drugs and see how it plays, or dmd and hope they help. I was of the first, needing drugs now before the wife kills me. Good luck dude. Happy thoughts. Hugs and ice cream.

Hi

My neurologist doesn’t like labels. He thinks there’s too much overlap to confidently state that a person is RR or SP. I suspect he’s the same when it comes to PP.

Many neuros prefer to assume a person is RR in the first instance unless there is very clear evidence that they are progressive from the get go. The reason for this is so that you qualify for DMDs and if there’s any possibility that you are still RR they want you to have the option at least of DMDs.

It can take months and months to get remission from a relapse, and as others have said, there are some things that never remit entirely. So my first relapse was 20 years ago and I don’t think I’ve felt my feet properly since then. Equally fatigue often stays with you to a lesser or greater extent. But other symptoms have remitted over time. I’ve had optic neuritis several times and each time it’s completely remitted. I had a humdinger of a relapse 5 years ago, and while I’ve never entirely recovered, there was partial remission.

So, don’t expect your neurologist to have all the answers. At best s/he can make certain assumptions based on the clinical evidence. But it could be a few years before you really get a better idea of where you are in the spectrum of MS. Just be honest with yourself and him/her about what has and what has not changed. And don’t be surprised if in a few months time, you suddenly realise that a symptom that you’d been living with has gradually faded away

Sue