Relapse & Remission

New diagnosis and before diagnosis
1

I have a question regarding relapse & remission and hope somebody can help with this.

Although not diagnosed as yet, everything is pointing toward MS.

Obviously I have been reading about the condition and here is where my question stems from. Most of what I read talks about relapse & remission but I’m not sure what the remission stage is.

I do suffer bouts where I am in screaming agony with pains in my back and cannot even attempt to walk but when these bouts are over I am still left with constant back pains (although greatly reduced), 24/7 burning inside my right leg and foot drop in my left. I find it hard to concentrate and feel tired all the time. My arms go extremely heavy and weak and I sometimes drop things. I lose my balance and am prone to fall over. I have ‘blank sposts’ and cannot bring into mind names of objects or peoples names. I’ll leave it there as I’m sure you get the picture. There has not been a day go by for a long time now that I am not experiencing 1 or more of the above…

So my question would be, with all this other stuff going on and my NEVER having a ‘normal’ day without something going on, is this considered a ‘remission’ period with the ‘screaming agony’ attacks being the ‘relapse’. I’m very confused and frustrated with this as I am reading that people with MS have ‘normal’ days after an attack…I don’t!!

Thanks,

mike

2

hi mike

ive read on here different accounts of how it feels for individuals, some people recover well from relapses where others seem to have some mild symptoms left over and dont feel completely normal again. i guess it depends on how much damage is done by a relapse and if your particular damage can be repaired.

i still dont have a confirmed diagnosis but dont ever feel normal although my symptoms are very mild they just dont go away completely but have come to accept that its not going to get better for me but thats ok, there are worse things in life to be ill with.

im sure that you will get a lot more replies later on when it gets a bit busier on here or you could try posting this on everyday living as well as here.

best wishes

mandy x

3

Hi Mike,

How long are your so called “bouts”?

By definition, a relapse has to last at least 24 hours, so if you had a pain, however severe, lasting - for the sake of argument - minutes to hours - that in itself would never be termed a relapse.

If you had a phase of days, weeks, or even months, when these pains were more frequent or more severe than usual, that whole phase might be a relapse, even though the pains were not constant. It’s basically a whole period of being worse - not every individual symptom within that period.

Basically, a relapse is any period of more than 24 hours when you have new symptoms, or a worsening of existing symptoms, that can’t be accounted for by anything else (e.g. not because you’ve caught a virus, or had a bad reaction to some medicine, or something).

Remission does NOT mean being completely fine. Some lucky people do get complete recovery - especially in the early days of the disease. However, for most people, as time goes on, remission means “better than when the last attack was at its peak”, rather than complete recovery.

So if you have, for example, a fortnight or a month when the pains are really frequent and severe, but after that, they’re not as frequent, nor as severe, but you do still occasionally have them, you might be in remission. Symptoms have not disappeared altogether, but have improved, relative to how you were.

Remission is always relative like this. It just means comparative recovery - not necessarily 100%. Many people often or always have some symptoms, even when they’re not relapsing. But they’re still better than they were!

Does this help, or just make things more confusing?

“Normal” days between relapses may be a different definition of “normal”. For example, a “normal” day for me (not relapsing) still means permanently painful feet, very poor strength and stamina, probably at least some abnormal sensations, such as pins and needles, a few attacks of cramp - which may be severe - and so on.

Believe it or not, this is still an improvement on my last relapse, when I couldn’t feel my feet at all, and thought I’d had a stroke!

Tina

4

I just wanted to add that there are other types of MS: SPMS (secondary progressive MS) and PPMS (primary progressive MS) being the main two. SPMS is a development from RRMS (relapsing remitting MS) - at least half of RRMSers will become SPMS after 10-15 years when their MS becomes progressive and (for most) relapses stop. PPMS is progressive from the start. PPMSers don’t have relapses and they don’t remissions, although they may have better periods.

(“Progression” means a gradual worsening of symptoms. The speed of the progression varies by person.)

Karen x

5

thank you for your replies.

i am too angry to reply properly, i just deleted two whole paragraphs because it was just a rant. I was told i would recieve a letter by today inviting me in to the hospital to “discuss my results”. The medical proffession in my area seems to be a complete joke … this is the fourth time since just before xmas that i was told i could get my results and still nothing. 5/6 years of getting progressivly worse and still being fobbed off is so God damned frustrating

6

Don’t worry about having a rant - we all understand! And it’s good to be able to let it out somewhere.

Really sorry that you’re getting the runaround re your results. Maybe they are getting other opinions internally? (I’m trying to think of a good reason for the delay!)

I hope the letter arrives soon, and that the appointment isn’t too far away.

Kx

7

On this question…if someone has a very bad 5/6 week period typical of a relapse after a gradual build up to it followed by gradual improvement then very clearly recovers from the worst period does that mean they definitely cannot have (at least yet) PPMS?

Obviously self-interest is at heart of this question but it might be useful to others too!

Thanku x

8

I think:

PPMS is something that people have from the beginning so, in its classic form, people with PPMS don’t have relapses.

There is a type of MS called progressive relapsing (PRMS) though. People with this have both progression and relapses from the very beginning.

SPMS is when RRMS turns into a progressive form of MS. The classic form of SPMS is progression without relapses (like PPMS), but some people with SPMS still have relapses (like PRMS). The main difference between SPMSers and PPMSers is that only SPMSers were originally RRMSers. (Confusing?! All those letters!!!)

Kx

9

[quote=“rizzo”]

I think:

PPMS is something that people have from the beginning so, in its classic form, people with PPMS don’t have relapses.

There is a type of MS called progressive relapsing (PRMS) though. People with this have both progression and relapses from the very beginning.

SPMS is when RRMS turns into a progressive form of MS. The classic form of SPMS is progression without relapses (like PPMS), but some people with SPMS still have relapses (like PRMS). The main difference between SPMSers and PPMSers is that only SPMSers were originally RRMSers. (Confusing?! All those letters!!!)

Kx

[/quote

hi karen

so is it true (in your opinion) that people with ppms have fewer lesions which make diagnosis more difficult , and if so, why do you think there are fewer lesions?

thanks

love mandy xxxx

10

I’ve read lots of different things about lesions and types of MS. From memory (which is not wholly reliable!), SPMSers tend to have more lesions than RRMSers and PPMSers tend to have more spinal lesions and less brain lesions than others. Also, people with progressive MS tend to have more brain atrophy than RRMSers (atrophy basically means permanent shinkage / death of brain matter); this is particularly evident in certain areas of the brain (e.g. the corpus callosum and medulla).

One thing is definitely true: there is at best a poor relationship between number of lesions and severity of MS. That’s because location is the key thing. Spinal lesions tend to be more serious than brain lesions because there is less room for manoeuvre by the nervous system - a lesion in the spine is like a car crash in a tunnel - there aren’t any available diversions - the cars have to squeeze through the gap around the crash. There’s more room for manoeuvre in the brain.

Another reason that some people can have more severe MS but fewer lesions is that lesions are not the only damage that MS causes. It also causes much smaller scale damage that can’t be seen on MRI. This is the damage that more likely underlies progression.

There is a great website that I recommend for explaining these sorts of things: http://multiple-sclerosis-research.blogspot.com/ You’ll have to use the search function, and it’s not always the easiest site to navigate, but it’s full of really brilliant information. You can also post on there and get answers to questions from real(:-)) neurologists.

Karen x

11

thanks karen

will have a look at that website xxx mandyxx