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PPMS AND DEMYELINATION

Hey guys,

Im still fairly new to this condition so once again sorry for all my questions!! Im glad to have you guys :slight_smile:

I was wondering does the demyelination carry on FOREVER? Or does it EVER stop? Because i know its hard to get the damage areas back but does demyelination just carry on?

So I have PPMS with no spinal or neck lesions but i have numerous lesions in my brain which have been increasing, however they are always inactive which i do not seem to understand. I have severe foot drop, walking issues and weakness in my left arm and I was told all of this is because of the demyelination from my brain.

Im taking Ocrelizumab and im worried that this demyelination will not stop and my symptoms will get worse and worse and nothing seems to be helping, its rapidly getting worse… I don’t know what can help my foot drop or balance and spasicity problems :frowning:

Hi there Ezzy, how did you get on Ocrelizumab when I’m told it hasn’t been certified yet & does it involve having chemo? From what I’m told, the demylination is with those who suffer MS forever. It seems to be where the human bodies own immune system attacks itself. Hence why I always advize on boosting the immune system to evict the problem. Once the demylination takes hold, through the bodies entire nervous system. The treatments become extreme to none existant. So keep exercising & live as best you can. My view is forget medication & focus on diet & exercise ASAP. Until there is a confirmed cure. Take it easy & sleep as much as you can. The human body is amazing. It gets confused at times. Especially with input from idiots who should know better. Best regards Terry.

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Hi Ezziiy

Have a word with your OT and ask about a Fez for foot drop to see if that would help. If you haven’t got an OT your GP can refer you or you can ring adult social services to make an appointment with one.

For the spasticity ask your GP, ms nurse or neuro for Baclofen, that’s what I take, and whilst it does not stop it completely, it certainly helps. If you do get a script for it, I would advise to start on a very low dose and if needed increase it very slowly.

Some people have found that motion sickness medication helps with balance, so maybe have a word at the same time.

Hope this helps, best wishes.

Pam x

Inactive is really the wrong word and I do not know why they use it. What it really means is that the lesion is not inflammed ( inflammation). It is however damage that has occurred already. It could be from nerve degeneration or maybe hidden inflammation which I have heard mentioned before which can not be seen on MRI.

When you had your MRI did you have contrast - because that is the only way they can tell if the lesion is active.

Moyna x

Hi Monya,

Yes i did have it with contrast and i was told it was inactive. So when does the demyelination stop?

Hi Terry,

Thank you for the advice. So how will i know that the progression has stopped or the demyelination has stopped? Does no new lesions mean the progression and demyelination has stopped? I am taking it in Germany as a part of a trail.

Ezgi x

Hi Pam,

I will definitely look into the advice you have given. I just feel like exercise will not help my foot drop :frowning: i cant move my ankle upwards :frowning:

Ezgi x

Hi Ezgi

I think one of the biggest problems with MS, of whichever variety is that the disease pattern is very idiosyncratic. So what happens in your disease pattern will not necessarily be the same as with the next person. It’s possible that what has happened to you is that the places in your brain where demyelination has occurred have now become scarred, but that as the Doctors are telling you the lesions are now inactive, there is no active inflammatory demyelination happening now. This doesn’t mean it can’t become active again (I don’t think) but right now it’s not.

It sounds like you need to concentrate on some of your specific symptoms rather than on whether demyelination is continuing.

Pam gave you very good advice. For foot drop, ask if you can be referred for FES (Functional Electrical Stimulation). This helps your foot to pick up when you are walking. A physiotherapist might be the best person to advise on this. They would also be able to help with balance exercises. Strengthening your core is sometimes what’s needed for balance. Or if you have vertigo problems, then vestibular exercises can help.

Baclofen is a good drug to combat spasms. But it can also be weakening. So it’s a case of balancing out the amount of the drug to combat the spasms whilst not weakening your muscles.

Or of course if you don’t want to take extra drugs, look at the diet and exercise route which Terry suggested. Exercise is always a good plan regardless of whichever drugs you take. Core exercises are definitely a plus for the future of your balance, strength and mobility.

Sue

Thank you for the reply. It all kind of makes sense. So foot drop is a result of demyelination? I haven’t even been told that i have foot drop. Im just assuming because i cant lift my ankle up properly. Does exercise help foot drop? And does foot drop get worse over time because thats whats happening to me

Ezgi

Foot drop is when as you walk, your toes won’t pick up properly. See https://www.mstrust.org.uk/a-z/foot-drop for more information.