Overcoming Multiple Sclerosis

Hi all,

I've been lurking on this forum for years now, but this is the first post I've made. I haven't poste this in the wrong section by the way. All is explained below. Sorry for the length of this, but I thought I ought to give you the background.

I was diagnosed about 22 years ago with RRMS. I declined interferon as a 28 year old as I didn't feel I felt sufficiently bad to puyt up with the side effects and then spent about 10 years getting (what I felt to be) progressively worse and feeling ill more and more of the time. I'd moved from one health board to another and I think the system had essentially lost sight of me. I was having several relapses a year and was starting to lose my nerve. i rememberd sitting in the MS clinic surrounded by people who hadn't fared too well with it all and started to feel pretty hopeless and helpless.

Then by complete chance, I found Taking Control of MS by George Jelinek and that moment kind of changed my life. I've been following it ever since and I'm well. I haven't had what I'd think of as a proper relapse now for 4 or 5 years and although I do get fairly regular flare ups of old symptoms (mildly) and suffer from fatigue quite regularly if I over do it, I am in a much, much better situation now than I though I would be 10 or 12 years ago.

I send my heartfelt thanks for that to George and to all the contributors to this website and programme who have continued to inspire me over the years.

**And now the new diagnosis bit **

However, last summer (2020), in the middle of Covid, our youngest (13 year old boy) got tingly feet. I knew a peadeatrician, who suggested going to A&E. We were sent away with a diagnosis of anxiety. We might have taken that had it not been for my history. So we went back, via our very helpful GP and he got admitted, MRI scanned, lumber puntured and ultimately diagnosed with what would be MS, if it happened again. We were gutted. He got put on elephant strength steroids and the syptoms passed. He had a very nice paediatrician.

We then saw the very nice paediatrician again a little while later, together with a neurologist and he had another MRI scan after 6 months, to see what was going on. The neurologist was very unconvinced by the lifestyle management approach.

The paediatrician contacted us with the scan results and we had an online consultation with him. The new scan he said showed a bit of new inflamtion, but he wasn't too worried, so lets sit on it and see what happens. We were slightly reassured.

Then we had a face to face appointment recently which we thought was going to be with both again, but ended up being with just the neurologist (the paediatrician couldn't make it). She had a completely different view of his second scan. She felt there was significant additional scarring and wanted him to start treatment. The same interferon I'd declined 22 year earlier, or maybe copaxone. We are gutted all over again.

Two very different opinions on the same thing.

We've asked for another MRI scan, as the one they are basing this on is 9 months old. He's had 9 months of extra Vit D and as much of the diet as we can get hm to eat since then. The last scan was quite soon after the initial burst (which took a while to go completely). He has had no new visable symptoms since that initial bout and feels fine.

This is a tricky situation. We've got a neurologist (who ought to know what she is talking about after all) advising interferon / copaxone and the paediatrician saying it all looks OK to him (I've managed to get to see him again next week). We've got the (very nice) specialist MS nurse on our trail, very keen to show him all the lovely things he can use to inject himself with 2 or 3 times a week. When I declined treatment for myself I was a 30 year old adult. I could do whatever I wanted. To commit your (now 14) child to regular injections which could well make him feel worse than he would do without them is a tough ask. Equally to go against the advice of a consultant neurologist, is also a hard decision.

I'm not asking you for advice, as such. That would be an unfair thing to do. However, I would really welcome any thing you could offer by way of sharing experience. Have any of you had anything like this ? Are any of your kids in a similar position ? If so, how is it going ? Are they on treatment ? If so, how's that going ?

I feel there are risks either way we jump, and we just don't know what to do !



Any comments / responses appreciated.

Thanks,

Matthew

Hi Matthew. I have no experience of what you're struggling with.
It's one thing making decisions for ourselves, quite another to make them for someone we love.
It certainly doesn't help that you're being given conflicting information.
I hope your next appointments can make things clearer for you.
At his age you're going to have to involve your son in the decision as much as you can, I think.
Wishing you and your family all the best, L