Hi Paul here, not diagnosed but got lots of symptoms. I’ve had MRI scans and they show nothing relating to demyelination but going for a second opinion next month from a neurologist.
I am convinced I have MS. My dad has it. I have so many daily symptoms which is effecting my life, relationship and everything. These are dizziness, balance, walking, tingling, memory, brain fog, the list goes on. Just don’t feel like myself anymore.
Is there any kind of happiness or contentment found in having ms and all these symptoms daily? Does it get better? Or is it just a downward spiral? (I’m sorry I sound so negative) but I’m really struggling. I’ve experienced my dad go downhill rapidly and went from RRMS to SPMS unfortunately. I just feel like if this is what my future has in store with no happiness or satisfaction from life,
Is there really a point? I’m genuinely so sorry for being negative as I don’t even have a diagnosis but I think if this is what I am like now, how will it be if I am diagnosed and things progress and get worse. All thoughts and experiences are very welcome, thank you so much for listening.
I was told I had aggressive RRMS 20+ years ago. It took a long time for me even to be able to say the words without collapsing into an incoherent, howling, snotty mess. I don’t think I was doing anything wrong: there just isn’t a pain-free way of dealing with that kind of life-changing dx (or in your case the threat of it). I think it is just one of those times when life drags you under and you have to suffer and struggle down there before you get to surface, breathe again and start to take stock. 20 years in, I am happy and grateful to be as well as I am, and in 1999 I would have been happy to hear that I was still getting about in a limited way. At least I think I would. Maybe my 1999 self would be dismayed to know how hampered I am in so many ways and would wonder how I could stand it. But I’m not that 1999 person. I’m me, now, and I’m making the best of it and it’s OK. If it comes to it, and I hope it won’t, so will you. We find ways to deal with whatever comes along. If you do end up getting an MS dx, it isn’st going to be fun and it isn’t going to be pretty.
But if my experience is anything to go by, it will be OK for a good while, even if it isn’t quite the sort of OK you had in mind. The point is that your definition of OK will probably turn out to be more flexible than you think right now. I’m not trying to say that having MS is absolutely fine because it bloody isn’t, but you know that already from your own family experience. But the treatments available for RRMS at least are transformed since your dad got his dx or I got mine. And we are very resilient creatures.
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