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PPMS

Hi my son was diagnosed with MS in January this year. The consultant said he thought it was relapsing remitting but I see a big difference in him since Jan and have always felt it was PPMS. He has all of the described symptoms of ppms. How do they know which one it is because I was under the impression that there was no scientific way to prove which one it was.

From what I’ve learned, it usually goes on where the scars are. Maybe more on the spine, than in the brain & key give away signs with disability. I have PPMS & if it isn’t speech, MS hug or Optic Neuritus. It’s poor walking & bowl problems. An all round problem, that never stops & gets much worse with heat & stress. Get your son to eat more fruit & drink plenty of water. The final result will show eventually. MS is a very tricky condition to diagnose. Staying cool is key in this weather. 18 degrees seems the perfect temperature for me & keeping away from certain foods, that seem to magnify the problems. Out of date foods & too much fat. Garlic is awesome! Terry

If he never gets relapse it is progressive! It is that blunt but mine has been progressing for over 25 years everyone is different mate of mine had bad attacks in wheelchair for month and them back walking for a year then another spell etc etc. Everyone is different. XXX Don

Hello Fi

Most neurologists tend to in the first instance diagnose relapsing remitting MS rather than progressive. This is because often they can’t be 100% sure which it is until some time has passed. If someone has had symptoms for a few years before diagnosis, it’s possible to diagnose PPMS from the outset. And of course years ago there were no disease modifying drugs (DMDs) for relapsing remitting MS so it made no difference as to which was diagnosed, no treatment to change the disease course was possible.

These days there are DMDs for RRMS. So a neuro is likely to start with that diagnosis and possibly alter it later, if the disease progression shows that it’s actually PPMS. That way the patient is able to be prescribed DMDs. These are supposed to reduce the number and severity of relapses.

With regard to the terminology used for the different types of MS, they are a bit misleading. Relapsing remitting implies that a person will have a relapse, ie develop new or repeated symptoms, then after days, weeks or months, possibly with the aid of steroids, have complete, or at least partial remission.

This basically isn’t strictly speaking correct. Often the inflammation of the central nervous system which causes damage to the myelin (the nerve coating which is supposed to protect it), is severe enough to cause lasting damage to that nerve. This is why people often have relapses which cause damage from which they may get some recovery, or none at all, and they are left with permanent deficits or disability. This can be the case with optic neuritis, or with walking problems, bowel and bladder symptoms, and cognitive damage. Or indeed damage to the nerves controlling the hands.

In my case, my first relapse was over 20 years ago. I’ve not been able to feel my feet since. Frequently ones body compensates for the deficits, but sometimes that’s just not possible. I also had a real humdinger of a relapse 6 years ago. To begin with I was told, ‘you’ll be able to walk again, maybe with crutches’. That was changed to ‘with a walker’.this was then changed to ‘you may need to use a wheelchair some of the time’. Basically, I never walked properly again. (But I did not have the protection of a DMD because I was unable to take them.) My diagnosis was changed to secondary progressive about 2 years ago.

Equally, it can take months and months to get any remission at all. And of course, another relapse can happen before even a small amount of remission has started.

So in other words, you might be correct, that your sons MS is progressive. But, it is still possible that he has RRMS. It could be a couple of years before the neurologist is 100% certain which label is most correct.

Best of luck. Hopefully your son will improve over time and can take a DMD preventing disabling relapses in the future.

Sue

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I was diagnosed years ago, but it was a good year (as far as I can remember) after diagnosis they said it was progressive, as I never had relapses, just never went away.

Although I have used a power chair for years now, ppms for me has been a slow gradual decline, so we are all different.

Best of luck for all of you.

Pam x