I haven’t had a complete break from symptoms since this started in July.At first it consumed my whole body but now it has settled into burning hands, the feeling of tightly wrapped arms and other random things that come and go.co ordination is questionable ,as is memory. I was talking to someone with ppms and we were discussing how he never had the wierd sensory symptoms. Does this mean mine won’t be ppms?
lynn
Hi Lynn,
The experience of MS can be very different for everyone. Even people with the same sub-type can have a completely individual set of symptoms. So no, I don’t think having different symptoms means two people could not have the same type of MS.
However, there are some other indications yours probably wouldn’t be PPMS, because you mention that you have got better - albeit not completely.
Whole body symptoms, resolving to just the hands, is quite a significant improvement.
Usually, with progressive types of MS, there isn’t this pattern of flare-up and recovery. It just gets worse (but not always quickly).
Don’t be mislead by the idea that always having some symptoms means it’s automatically a progressive type.
Even though it sounds contradictory, relapsing remitting is still a “progressive” disease. Although complete recovery from attacks (relapses) is possible, especially in the early days, many people find there is residual damage that never completely resolves. So being in remission doesn’t necessarily mean you feel fine, and have no symptoms! It just means you’re better, compared to how you were when you were having the relapse.
For example, I always get painful feet now. This is due to permanent damage. But during a relapse, I couldn’t feel them at all. So although there’s been some improvement (sensation returned), everything’s not 100% OK.
Any degree of recovery suggests a relapsing remitting course. It needn’t be complete.
As an aside, as much as MS varies, I’m very surprised anyone with a confirmed diagnosis hasn’t had at least some “weird sensory symptoms”, as these tend to be very much a feature of the illness, even though everyone might get their own individual type of weirdness.
Tina
Ditto Tina: A significant improvement suggests RRMS + we are all really really different so no one person’s MS is exactly the same as another’s.
It does seem like there is a sensory/motor split to MS. I’ve no idea why some people’s MS tends to attack sensory processes more and other people’s MS goes for their motor processes more, but it’s fairly common to find it. I get pretty much every sensory symptom going, but I have quite minor motor symptoms. Some of my MSer friends are the opposite. Of course, you also get MSers with both equally, just to keep things complicated!
It seems so strange… The sensory nerves and the motor nerves run in separate columns along the spinal cord. Why one is attacked and the other spared in what is supposedly the same disease, I have no idea.
Karen x