Hi everyone
After reading posts on the forum and speaking to my mum who has RRMS. I have realised that I don’t actually have periods of worsening of symptoms and periods of remission. The strength of my symptoms vary day by day, some days are worse than others and the symptoms themselves may vary, however they never completely go away. Does anyone else experience this?
Claudette
I’m the same Claudette. I haven’t been diagnosed yet (apart from ME/CFS) but have found that apart from the odd new sympton appearing from time to time, I haven’t had what I would think of as a remission in 8 years. Not sure what to think of it really. My Mum has MS too but has far more energy and stamina than me.
Mags xx
Hi Claudette,
I too am the same. I am not dx yet, I’ve not felt ‘right’ for ages now. No one seems to know what is wrong with me. MRI has come out clear, I have to see neuro in Nov. but have really stiff ankles and some days can hardly walk, I have so many other symptoms too. I’m off to see the GP again next week!
Wendyx
I’m the same as well. I have been diagnosed just recently after a year of feeling odd to say the least. I asked the neuro wheather this was me now - Dizzy, weak, tired etc and he said that it probably was. Symptoms have been pretty constant for a year now.
G
Hi Claudette,
In general terms a relapse is thought to be the appearance of new symptoms, the return of old symptoms or maybe even a combination of both for a period of 24 hours or more and at least 30 days from the end of the last known relapse.
But a relapse doesn’t include exacerbation of symptoms which is caused by a raise in the body temperature or by things like an infection or a cold. Other things like the temperature of the weather can have a big effect on our symptoms too - for me the humidity (and the extreme cold) makes me feel absolutely terrible: the fatigue is far worse as are my cogntive issues, my legs are like they’re made of concrete and I feel like I’m dragging myself around. Everything is exacerbated
Stress can have the same or a similar effect too, as can overdoing it (amongst many other things) - hence why some days we can feel better than others.
SPMS can be diagnosed from the start and it’s thought that approximately 85% of people with RRMS go on to develop secondary progressive after some years, but just to complicate things this isn’t always the case either - again it does vary from person to person just like everything else about ms does.
Going from a dx of RRMS to SPMS can also take a while to be definate about and most neurologists won’t commit to it unless they’re sure (surprise surprise!). It’s not helped by the fact that even though a lot of people with secondary progressive don’t suffer relapses like in relapsing remmitting - some still do!
Symptoms like fatigue, neuropathic pain, sensory sensations, balance and cognitive issues can all be symptoms that we may have on a day to day basis and most of these can be helped with various medications. The vast majority of ms’ers are on medications for something or another.
In short, nothing is black or white because ms is very much a personal illness, what may affect one person may never affect another. Over time though we do begin to learn what may be the trigger our own symptoms.
Until a diagnosis of ms comes along the best thing to do is keep a brief note of your symptoms and keep your neuro up to speed because he may be happy to prescribe meds for any particularly troublesome ones in the interim period.
Hope that helps
Debbie xx
I feel the same too. Ive not felt well for about 2 years now… back and forward to my GP who diagnosed Fibromyalgia, but with the Optic Neuritis, tremors, jerks, feeling pretty rubbish for the past 12 weeks, I wonder if its been this all along. Im not dx yet, and see Neuro on 3rd July. Its not good to feel so poorly for so long. I feel like my life is wasting away at times as I just dont have the energy to do anything 
Lets all give ourselves a big ((hug)) xx
(((((((((((((((((((((a massive BIG hug))))))))))))))))))
xxx
Bit late to the discussion here, Claudette, but remission does NOT necessarily mean feeling completely fine - as if you weren’t ill.
For a few lucky people, that might be the case, especially in the early days. But generally speaking, the longer it goes on, the more likely you are to have a few symptoms that don’t go away.
Relapse and remission are relative terms, not absolute. Remission just means being better than you were during the acute phase of your last attack (relapse).
It doesn’t mean a return to pre-MS days, and zero symptoms.
Tina
Thanks everyone sending you all (((((hugs))))) I think i am just trying to find reasons to convince myself that it probably isn’t MS. I am still unsure if i have experienced relapses, i will keep note of everthing and mention it to the neuro when i finally get an appointment for my mri results. All of you take care x