There are two processes in MS. Inflammation and nerve damage. When inflammation goes down which is a remission many symptoms go away. Inflammation can be there for months. If symptoms do not go away that is nerve damage and those symptoms are there to stay. You canb have both at one time. Steroids work to reduce inflammation they do nothing for nerve damage.
For example my double vision is due to nerve damage in my brain stem. I have had it since my attacks in the 1960's. Weakness on my left side comes and goes that is inflammation.
I am very new to this - I have only had one "attack" (that I know of, but that's a discussion for another day), so my experience my not be typical of RRMS.
In my case, I ended up in the ER with my right arm and right leg very suddenly not working properly, and I was very afraid I'd had a stroke. I was very uncoordinated (at least from my perspective). That first night I was pretty unable to walk without assistance, write my name or type, and in subsequent days those symptoms lingered to the the point that I did actually use a cane at times during that first 2 weeks after it happened - and was long unable to produce legible writing, or type without looking at every right hand key I wanted to hit, and every glass and plate in my home was in great danger from the fact that I could not control the small but noticible tremor whenever I would attempt to pick things up. And I was dizzy, as in dizzy enough that the first week after the attack, the thought of driving was pretty dicey and I did not attempt it for about 5 days.
It took about a month, but the uncoordination finally resolved completely, with me being able to walk without fear of my leg being unsteady, and I am now able to type and write again.
HOWEVER, and here we get down to it, I would say yes, I have been left with.....something.
The lightheadedness and dizziness has never left me and is always with me to some degree now. It seems to have a visual component too, with lights and movement across my field of vision or in the periphery, causing more disorientation, as does my field of vision flashing around me when I turn around quickly.
I have also been left with a very real danger of experiencing the dreaded MS fatigue - it hit me that first week afterward, but I didn't yet know what it was. And as someone who has had fibromyalgia for a bit, I'm no stranger to fatigue, but this is WAY different from that. It's all they say and more. I liken it to being dipped in concrete and then asked to walk through molasses. Luckily, it doesn't hit often and I have a sedentary job and a small home, so I have not had it impact me that much, yet.
So, I have to pace myself much more than before, and move more slowly and deliberately, but that's about it so far. And believe me, I'm so utterly grateful that is all that I've been left with, it could have been far worse and I know it. But as many can attest, since the bleeding is not arterial (turn of phrase only) and I still LOOK OK, not a single person I know can relate or understand when I try to explain the fatigue. They say things like, "Oh, I hear ya, I get so tired too!" And I'm thinking, no sweetie, you don't.
A really good question! My first 2 attacks were all the same with visual field loss, extreme fatigue and cognitive issues. Each symptom took 2-3 months to "heal" to the point that I felt like myself.
My third attack seemed the same but my arms were really sore at the beginning and the vision only took a few days to get back to normal. The cognitive and fatigue issues took their usual 2-3 months to go away.
I happened to have a neuro exam a few months after that third attack and was told that I had arm and leg spasticity. One hand and one leg is noticeably weaker than the other. Interestingly enough (or not) the stronger hand seems to be weaker this year and I am having some dexterity issues which I attribute to decreased fine motor skills due to the spasticity.
Since then (that was a year and a half ago), I have had more and more issues with spasticity and arm/leg pain along with several transient episodes of numbness or tremors.
I still have ongoing cognitive issues that didn't seem to heal fully after the third attack but my vision has remained stable.
I do not really know anymore if I have attacks because my main issues these days are cognitive and spasticity related and that may be my new normal now.
Unfortunately I've never been 100% since my first flare. I spent several years not sure if I was in a flare or not, because I felt so awful. The last two years I've felt almost as good as I did before I got sick - aside from the walking/coordination and the fatigue issues.
Hi TIPC -
I think your question is a good one, and one that will have unique answers from all of us. No two people have the same MS.
For me, I was diagnosed 20 years after MS made its first appearance. Including the relapse that lead to my DX, I have had 3 definable relapses. THe major symtoms associated with each were different, and once they resolved they did not recur.
In the time between relapses I have accumulated a short list of symptoms that are with me all day, every day. THey are completely different than the symptoms associated with my relapes.
By the time I was diagnosed I'd moved through RRMS and landed in SPMSville. I'm less likely to have diefinable relapses and more likely to see a slow, steady progression symptoms.
So that's my unique answer to your question :-)
When I am between relapses, I only have my permanent foot drop, which is controlled by a brace. Fatigue will occasionally sneak in, but I tend to have some very good months at a time.
It really is like playing bingo, you never know which number is going to come up or how MS is going to affect you. As others have told you, its so varied and different for each of us.
Hope our questions have helped you some.
Thank you all so much. I look forward to receiving more responses like these.
HVAC: That is the logical, "scientific" (?) answer that my mind was looking for to add a sort of structure/vizualization to my thoughts.. or something like that.
I appreciate everyone's sharing. There are a number of points that are familiar to me.