Newly Diagnosed but is it MS

I’m a little confused by my diagnosis today - I’ve been having lots of tingling and numbness in my feet and my hands but over the last few months the numbness in my left hand has got to the point where I will pick things up but then after a few seconds can’t feel them in my hand and I will drop them I’ve also had recurring bouts of optic neuritis but none since last year - 2013 they did an MRI and they couldn’t really see many changes then in January 2020 I had another MRI as hands were getting worse - couldn’t get the results until today because of COVID and lockdown went back today and they said there is definite evidence of the sheath surrounding my nerves (myelin I think she said) being damaged, so this was all done through the Eye Hospital so they have know referred me to the neurologist as she suspects MS (my brother also has it) but what I’m confused about is I thought MS symptoms came and went and apart from optic neuritis (which does come and go) all of my other symptoms have never gone away just got worse!

Sorry it’s a long post it’s taken a long time to get anywhere and now I’m just confused!

Hi Emma - My understanding is that they can come and go, but that over time some stay! I think it is then classed as Secondary Progressive - which is a development from Relapsing Remitting MS. But as anyone on here will tell you MS can be a different experience for every individual. I had symptoms that started in my 30’s each individual symptom has been treated separately over the decades ( I’m now 57) by doctors including a very basic Neuro appointment years ago - eventually after many of the symtoms never going away, I was referred to another Neuro, but since then I have been diagnosed with EVERY type of MS that exists. So sorry to say that even with neurologists involved it is still far from straightforward! Good luck x

Hello EmmaJess

MS, as Juniper said is such a perplexing disease. It’s different for everyone.

But, the way it works is in general, people have either the relapsing remitting type (RRMS), or the primary progressive type (PPMS).

Relapsing remitting is the most common, something like 85% of people have this variety. Relapses can come and go relatively quickly, or can take simply months to either completely or partially remit, ie get better. When suffering a relapse (which could be a repeat of a symptom you’ve had before, Eg when you’ve had optic neuritis), the only real treatment is steroids, which aim to shorten the recovery time. Some people begin with RRMS and after some time, generally years, their disease pattern changes and they develop secondary progressive MS. This means in general relapses stop and there is continued progression, which can be fast or slow.

The other type is progressive from the outset. People with PPMS never have relapses exactly, they may have small fluctuations of their disease, but generally there is just disease progression, again either fast or slow. Disease progression isn’t exactly the same as disability progression. Some people have PPMS for years and don’t have significant disability, others become disabled more quickly.

For more detailed information, see

There are always oddities who don’t follow either of these patterns, some have a one off occurrence, this could be labelled clinically isolated syndrome (CIS). Others are diagnosed in retrospect as having had benign MS, where relapses are so small and mild they don’t really fit the RR definition. Then there is relapsing progressive MS, where relapses continue, even with some remission, but there is also continued progression. This is actually what I now have, after years of RR, it seemed that I had become SP, but then I had a couple of very clear cut relapses.

The world of MS is strange and peculiar. As we know, each persons MS is as individual as they are, so while we share symptoms, no two cases are identical. Even your brothers experience of MS will differ from yours.

The other thing to know about the classification of MS is that, there are many disease modifying drugs (DMDs) available to reduce the number and severity of relapses. See The majority of these are available for RRMS only. Ocrevus is the only DMD that is also licenced for PPMS as well as RR.

Once you’ve been officially diagnosed, it is likely that you would be treated as having RRMS initially at least. Having had ON several time which remitted, this would be most likely (in my non-professional view). Your other symptoms could still improve over time, especially if you start having some physiotherapy. Most people tend to be given the RRMS label at least to begin with as it’s not an exact science, defining which subtype of MS you have, and that way you have the benefit of DMDs.

Hopefully some of this information will help. The more reading you do on the subject, the better informed you’ll be, although when first diagnosed the volume of information is a bit overwhelming. It’s best to stick to reputable sources of information, for example the MS Trust or the ‘About MS’ tab on this site. Try to avoid random googling, not every site is exactly correct. I’d also take all information you get from us on this site with a pinch of salt, try to back up what we say (including my own posts - I’m just another person with MS, not an official source!).

Best of luck.