Hi, I was just wondering about the progression of ms and how much of it is or could be put down to the cumulative effect of the symptoms of the ms. I’m probably not making much sense here but when I had my first episode, I had pins and needles in hands, arms, legs and feet and the ms hug. Some of the symptoms went but not all and although I don’t seem to have had definite relapses since,I’ve had a steady ebb and flow of symptoms. Sometimes my walking is bad. Sometimes I have a dodgy bladder, but I never return to feeling well and it feels like I’m going down a slippery slope. My hands have never recovered and I constantly feel like I’m just getting over the flu. I’ve been struggling with fatigue and could do with a nap every afternoon and still want to go to bed early. Now I have a tremor as well. I wonder if these are new symptoms of the ms or feelings caused by my ms? Lynn
I’m confused with all of this as well Hope you get some answers x
Hi,
I think we’re all confused at times, for me mine it has been a slppery slope, I was DX’d at the age of 46yrs, never given a label at that point as I think they were just waiting to see what happened, gradually the symptoms I had stayed with me and then new ones came along, so after being DX’d for 18mths my nuero then told me I was SPMS, mine thankfully is supposed to be a slow one, but at times it doesn’t feel like that, my advice, write down everything that happens to you, even if you think its nothing and speak to your MS nurse, if you have one, nuero and GP, good luck, x
Hi. Good Morning !
Mmmmm. Me thinks that sometimes it just doesn’t pay to think too much. Unfortunately, that’s a major problem for me.
That said, since my first major relapse in June last year, I’ve stopped over analysing and am just taking each day as it comes. That’s not to say that I haven’t become a tad more proactive.
In June, the relapse caused partial paralysis of my left side. It continued until August at least. At todays date, I am virtually back to normal. I’m back training and life is pretty good. That said, some residual damage has obviously been caused which I do not think will disappear over time- I now suffer from Secondary Dystonia. Thankfully, it ebbs and flows and tends to rear its ugly head if I am tired or fatigued eg. after a training session or during the evening! In addition, I tire easily, so am constantly resting to recharge my battery. If I clock up too many miles during a run, then I also develop a really heavy left leg. At that point, it’s a case of reminding my left leg- lift, lift, lift…
Interestingly, back in 1995, I experienced a co-ordination problem that coincidently affected my left side. It completely disappeared and something similar did not reoccur until 2007. Again, it disappeared completely.
Obviously, there is de-myelination in my brain/ spinal chord that is now too badly damaged that a complete repair is not now possible. That’s OK, I can live with that- I’m still fit and active. In addition, the first Alemtuzumab (Lemtrada) that was administered to me during September has hopefully helped (if only a little!).
So, I guess that is why DMDs are so important, whilst one is relapsing, remitting. The more relapses that one’s body endures; especially if the same area is constantly being attacked (as in my case!), the less likely that a full repair of the damaged nerve/ lesion is possible. As in my case, if the damaged nerve/ brain lesion cannot repair and is further demyelinated, then further permanent damage, and, quite likely, disability is inevitable.
Oh well. fingers crossed!
Tracyann
ps. Tonka- I did reply to your earlier thread ref. your tremor. You may find the information useful.
Hi guys. I was dx about 20months ago and like you can’t say iv had a relaps not sure what one is? Iv just gone from, tingly feeling in the right hand, arm, and leg, to hardly being able to walk at all, I’m now on DMD rebif + other oral stuff, but not sure any of it actually makes any difference? I just feel like my lower back is week and have no abb muscles,so for example if I go to the loo I can’t stand and pee, cos my legs feel like they are going to collapse, but I feel that if I could pull my abbs in, I would be ok??? (Is it only me) good talking to you all. Graham
I was diagnosed with MS in 1999 - from my symptoms and myelin damage on an MRI. I have some balance problems at this point (couldn’t walk downstairs without holding the handrail) and some weirdly strong reflex reactions to basic tests the GP did, which was why she sent me for an MRI. This showed plenty of damage but it hardly affected me at all.
In the fifteen years since, I have become quite disabled. I can just about walk 25m with two sticks but my legs don’t work well at all and I have bladder problems, on and off. I didn’t have any recognisable relapses for the first seven years, then had one a year for two years, then went to having about three a year. I was deteriorating slowly before I started relapsing and then faster the more relapses I was having. I have been on Tysabri since the end of 2011 and I think my rate of deterioration is slowing - I definately have fewer relapses and they aren’t so bad.
My understanding of accumulated damage to the nervous system and the loss of function that results is as follows. In people with MS, the immune system is continually attacking the myelin. This can happen in a low level way, resulting in gradual deterioration of function or in a more aggressive way, which would be a relapse. The body does do some myelin repair, or other nerve pathways are used, or the nerve pathways with damaged myelin work some of the time (but not when you’re tired, too hot, or having some other kind of stress on your body). As the disease progresses, you accumulate more and more myelin damage and you have symptoms that never go away, although the symptoms will still be worse sometimes than others.
Does that make sense? It’s my understanding from seeing seven different neurologists since I was first diagnosed and also from reading books and MS Society information.
Hi Lynn,
The way I see it is symptoms and progression are not the same thing. Symptoms do not cause progression, but the other way round: progression causes more symptoms, or an increase in severity of symptoms.
Despite being diagnosed with RRMS, I’m convinced my health has got subtly worse, both before and since diagnosis - in the absence of obvious relapses. Now either I’m misdiagnosed (I don’t think so, as they’ve always seemed reasonably sure, and so am I), or it isn’t just relapses that cause the problem, and there can be low level, insidious deterioration, that doesn’t take the form of obvious relapses - much as Sewingchick suggests.
Having said that, I think my deterioration would be barely detectable by any objective measure. My EDSS score hasn’t been measured lately, but I doubt it has changed at all, or maybe by half a point in 3.5 years. The biggest change has been in symptoms that can’t be objectively measured, like pain and fatigue - in other words, whilst there has been little change in my overall level of disability, I actually FEEL worse.
I have wondered, at times, whether this might be psychological, as I have felt a lot worse since knowing what it is, and no longer being able to pass it off as age, stress, hormones etc. BUT most people are diagnosed when their condition is already worsening, as if it was still minor enough to be blamed on other things, they probably wouldn’t be up at the doctor’s seeking an explanation in the first place!
So, I’ve come to the conclusion it isn’t just down to me dwelling on things more, now I know there’s not a harmless explanation. It’s down to me being diagnosed because things were already getting worse. If things had stayed the same I’d probably be undiagnosed to this day - but they didn’t, so that’s how I ended up diagnosed, and why I do feel worse now than before. Things were already on the march.
Tina
x
Hi Tina. @anitra yes I make you right, my nuro people actually said that they felt I have had ms for a long time, but not even noticed it, I was doing circuit& tai boxing up untill about 9 years ago, was very fit, makes me wonder if I had kept up the training would I have still been like this?? It’s like the dmds I’m on, how do you know if it slows the progression unless you could do a year with, then start again and do a year without, if you know what I mean. Lol
I’m not diagnosed but have been poorly for years…when I had a hum dinger of a bad do coming home from work in Sept last year…I had a word with my GP and said I didn’t think my meds were working so we agreed to me reducing the dosage. The idea then when the dosage was lowered sufficiently to introduce a new med. (which I know is the right way to do it rather than cold turkey).
Unfortunately the meds were masking other symptoms (well that is how it seemed) as boy did I become really poorly…so even though am undiagnosed and not on DMD’s I get where Graham 100 is coming from.
For me thus far a good thing has come out of bad as now things are FINALLY being investigated further but I wonder what would have happened had I not had the BIG do in September?
I am also left with additional things than when I have had ‘episodes’ in the past and as I say I am undiagnosed with regard to MS but for years going back to when I was 19 (am 42 now) have had lots of linked ‘episodes’ only never been thoroughly investigated…Vestibular Migraine was my last diagnosis and so limboland is awesome isn’t it?
Reading everyones backgrounds and the way MS has/is affecting everyone just puts a rock in the pit of my stomache 
MIchelle
Hi Tina
MS is your ms and although we have similar symptoms it really is different for everyone.
We know that my first relapse was in 1979 but I did not become disabled or get diagnosed until 2001. I could have been but it was missed a few time (obvious relapses once you know) and anyway I was training a lot and taking part in competitive swimming, hill walking and cycling.
If I had received DMD’s then I might not have had to use a wheelchair (2003) but I have no doubt that the drugs have helped me even though I am now SP.
Staying positive through thick and thin is key because being negative just makes everything that much harder. If you feel down talk to the ms team or your gp. Use the expertise that is there and don’r be fobbed off.
Best wishes.
Moira