Hi everyone, I’m a 28 year old guy diagnosed with MS in August 2012. Basically I was living abroad and since June started getting numb feeling toe and numb legs, torso and tight hands. Several trips to and from doctors and umpteen blood tests later all nwgative, I finally coughed up my hard earned to see a Neuro privately. By this stage I had lots of stiffness in legs, hands, feet and was getting pretty concerned. End result of couple appointments and MRI was a diagnosis of MS based on symtoms and MRI evidence conforming to McDonald criteria. Like everyone else on here I was gutted but hey ho, it won’t kill us so you just have to make the most and keep Carpe Diem at the top of your mind! Infact I almost had that tattooed on me the day after diagnosis 
I’m now back home and waiting patiently to see Neuros in the NHS to see what treatment options may be available etc. My biggest worry at the minute is that I may have PPMS even though the neuro hinted at RRMS. My legs, hands, feet have pretty much been sore since June with very little give in between. I get occasional torso discomfort that comes and goes. I have had suspected optic neuritis about a year ago. Everything a read about RRMS suggests that a relapse just lasts a few weeks and not 6 months like in my case! Anyone else with RRMS have symtoms that last this long? Sorry for the long message - Thanks in advance
Yes, i think.
i was dx with rrms in nov after more than 2 yrs of symptoms, some which has got progressively worse and never fade.
I say think, as i had more tests 2 weeks after dx and have now been referred to specialist as opposed to nurse, and rapid? rms has been mentioned.
Someone on here alot more knowledgable should help and good luck
Hi I was dx with rrms in June 12 so I am still learning about ms. However my big relapse started I’m February 2012 and I still have lasting symptoms. From what I understand you can get lasting symptoms with rrms. They are much improved from march when I lost all co-ordination and couldn’t write for about seven months! It can take months to recover from a relapse and can also leave behind symptoms, or at least I am still not fully recovered and seem to have come to a hault on improvements for a while. That is why DMD’s are an important consideration as although they only prevent about 30% of relapses on average, they can also help lessen the severity of a relapse and therefore hopefully lessen any lasting symptoms, which could gradually worsen your level of disability over time. If that makes sense, or at least that is my understanding. Hope that helps. Mish x
Hello and welcome
Carpe diem indeed - good attitude
The average length of relapse is about 6 weeks, but it’s not uncommon for them to last for a very long time, maybe up to a year? My average is about 4 months, but I had one 12 month period that was either one long relapse or several back to back ones (difficult to tell sometimes!).
One complication of RRMS/PPMS is that some people find that some symptoms improve whilst they get stuck with others. For example, I’m RRMS and my tinnitus and spasms haven’t got better since they first started, but I used to find that my pins & needles / buzzing / burning type sensory relapses recovered really well. But we’re all different and someone else might have the opposite.
I guess it’s best to wait and see what the new neuro says. It might be a case of waiting to see what your MS decides too.
Hopefully you’ll see some improvement soon.
Karen x
Thanks for all your replies - just got around to reading them today.
Without wishing MS symptoms on anyone it’s comforting to know there are others out there advised of RRMS with symptoms lasting longer than the generally stated ‘averages’. I guess an average is exactly that – some people will have symptoms that last less time and some longer!!
I met with my MS Nurse for the first time this week at the new Anne Rowling clinic in Edinburgh (the one funded by JK Rowling just opened a couple weeks ago and tipped to be one of the leading centres for research ) and came away feeling positive. It seems that worrying about the ‘type’ of MS you have is barely worth any effort thinking about because of the nature of the disease being so individual.
I’m going to stick to my carpe diem motto and deal with whatever my new wee friend throws at me as and when it happens! Anyone in the same position as me it really helps to forget about trying to type cast after diagnosis and just get on with life! I’ve know doubt the last few weeks spending every minute of every day thinking about my symptoms and what if this, what if that, if anything made my symptoms worse! Ooops!
Thanks again for taking time to reply – Happy Friday - adios for now!
Hi, would just like to add that many people are scared of a dx of PPMS thinking it is always worse than RRMS.
As with RRMS, all of us with PPMS experience different symptoms and different rates of progression. Many of us with PPMS progress quite slowly and there are PPMSers who are still fully mobile and working many years after dx.
As with RRMS, some people will have more aggressive symptoms… but it is wrong to think that PPMS is always worse than RRMS.
As you say, labels don’t really matter… MS is MS and having a good ‘one day at a time’ attitude is a huge help.
Pat x