I am new to all of this and I am just looking for some advice.
I am 25 years old, this all started in late March/April this year. I was at rugby training one night and all sudden my forearms went crazily stiff, I felt dizzy and like I was going to vomit.
Over the next few days I developed tingling everywhere and spasming muscles in my neck, arms and legs.
I’ve had MRI’s 6 months apart, that reported two small lesions 1 brain, outside of McDonald criteria area (juxta cortical, periventricular etc) and 1 apparently at the top of my spine that is very small. The second MRI reported that there has been no change and my lesions are stable.
I’ve experienced varying symptoms everyday since, the tingling in arms seems to have subsided, my legs still get crawlies and hurt some days, some bladder urgency, although I don’t know if that’s just me cos I drink alot of fluid! My eyesight seems kinda off too even though I passed a sight test.
I’ve had VEP and SSEP, both were normal.
My neuro has classified me CIS and isn’t worried that things haven’t seemed to get much better, he isn’t able to diagnose me as I don’t fit the McDonald Criteria.
Therefore, I guess my question is. Does this sound like PPMS because I haven’t had any remission as such after 6 months??
Hi Anon! I’m afraid nobody can answer that other than your neuro. I know it’s hard but I’m afraid it’s going to be a case of wait and see.
Do you have another follow up appointment with him? If not I would expres your concern to your GP and ask for one to be made.
A CIS does not mean that you will definitely have another episode - many many people don’t! Recovery times vary tremendously. It could be that your recovery time is longer.
I know it’s easier said than done but try to be positive xxjenxxx
Sorry can’t answer about the ppms but I had my first relapse 6 mths ago and slowly getting better but like others have told me it can be a long process. I still get days where It all seems to be coming back and feel worse but overall the big picture defo improvement. I am currently. Waiting a DX Hope you feel better soon Gray
I doubt it is PPMS due to your age and the fact that iniatial symptoms came on very quick. It takes a while for your system to repair itself. Sometimes symtoms persist even after lesions look has if they have got smaller or even disappeared on MRI. PPMS also usually starts with mild foot drop issues that get worse over time.- not with a sudden attack.
I was told by my neurologist that symptoms can take any where up to 2 years to repair them selfs. Possible concider asking if you can get a course of iv steroids (Oral are available but in my experience dont cut it in comparison). This is what my nuro dose for me and it dose tend to get things moving in the right direction. As for ppms not meaning to sound nasty here but I strongly dout it my first year was a nightmare with 2 major relapses in the first month and a half and another 2 within 6 months of that and from my mri my brain was peppered with lesions i got DX with rrms. Thankfully things appear to have stabled out now and I haven’t had anything in nearly a year now (touch wood)
MS symptoms can hit all of a sudden - I’m possible MS and my first obvious epsiode I was at the bank and had sensation of pins and needles suddenly all down my body for 30seconds. It then settled to numbness and pins and needles on my L lip and chin and this gradually progressed to hand/arm and foot/leg on L then bladder issues.
It took me almost 1 whole year to recover though I had two other episodes of things during the time I was recovering from the initial issues that prompted referral. Spinal issues tend to take longer than brain issues to resolve and thats because there’s no where e3lse to re-route all the neural messages (It’s like a long motorway and there’s no way to get to the exit that message needs unless it travels down the spinal cord).
In terms of RRMS/PPMS - if you’ve had any form of recovery from your intial symptoms then you would still usaully fit the RRMS category as far as I know. Unfortunately it doesn’t necessary mean you will have full recovery - you may still have residual symptoms. PPMS tendds to be no improvement at all in any symptoms and a build up of symptoms over time. But only the neuro can diagnose this as they’ll need to build up a picture of what is happening over time.
I know it’s difficult not to worry about the uncertainties of having more symptoms and whether you will end up being RRMS or PPMS. But there is a good chance you may just be left woith residual issues and don’t get anything further new. Sometimes the neuro’s need to wait for the evidence to be there for them to diagnose if further symptoms occur as of course they don’t want to give you a label of something incorrectly. There’s also a discrepancy between symptoms and lesions - some people can have many symtoms and few lesions and conversely some people are hardly symptomatic but can have many lesions.
I’ve had symptoms for 2 years now my first two MRI’s showed non-specific lesions (brain) so I couldn’t get diagnosed even though I had had two epsidoes of symptoms. There just wasn’t enough evidence even though everything else had been ruled out. After having more issues the neuro has said even though my lesions aren’t the standard typical of MS he has seen many patients with MRI’s similar to mine go on and have MS. So I’m having my MRI’s repeated with LP and EVP at the moment and waiting to see whether i can finally get an official diagnosis and some treatment which he is keen to get me on now.
Good luck with your journey anon. It’s not an easy one but it is nice to know you’re not alone with your experiences.
As a “likely PPMS” person, the neuro even said “it’s sort of crept up on you hasn’t it?” which just took the words out of my mouth. I’d had a few issues walking that came and went just like Moyna says…
I put a lot of issues down to tension, stress etc. and really didn’t understand why the spinal unit had referred me to neurology, I thought I had a trapped nerve!
Whilst I struggled to put one foot in front of the other I could still deadlift myself upside down and carried on instructing at the gym til a month before diagnosis, and I’d have probably done that for longer if I’d twigged that a hot bath left unable to stand properly.
The story for me is that there’s been no real improvement at all since it started - so I truly hope you don’t have PPMS and it doesn’t sound like it to me
MS is a bitter pill to swallow regardless. Not getting better is even tougher in some ways but it seems we’re less likely to get sudden changes like with RRMS. Whichever way you cut it, it’s rough. This forum is a great place to offload though.
Thanks so much guys for taking the time and effort to reply to post! I’ve gotta say, nothing really feels like it has improved. Then again I can’t really say it got any worse. I guess my real question for those diagnosed, specifically the RRMSers. When they say remission (I know it can be complete or partial) do they mean to the point where it’s like you didn’t have MS at all? ie when you’re in remission do you forget you have MS?
And when people say ‘episodes’, does that mean they don’t really experience any symptoms day to day? It’s more so an acute attack
The neuro suggested I come back in a year, until then go live your life. Far easier said than done (sorry to be so melodramatic) haha.
