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Question for Boudica

Hiya Poll, out of interest how long ago was the last time you walked with an aid? I’m now wheelchair bound and accept the fact that I’ll never walk again. Just wondering when your last time was? Linda x

Hi Linda, well dont forget I dont have MS…after being wrongly diagnosed with PPMS for 10 years. My HSP diagnosis is unproven too!

Oh it is some years since I was able to walk…about 15 ish.

Why are you asking hun?

pollsx

Hi Boudica,

Sorry for invading this post.

Just curious if MS & HSP are related in any way ?

Do they have similar symptoms ?

Only asking because I had not heard of HSP, and was wondering if the wrong diagnosis of MS, which is outrageous that it went on for ten years before finding out, lead to the assumption of HSP ?

Hope it’s ok to ask ?

Hi Poll, I’m secondary progressive (have been for quite a few years), I know you don’t have MS because you probably know I’ve been on this site for about 5 years and you were one of the first people I got advice and humour from! Now after various relapses I don’t seem to recover, my last one was breaking both legs due to my bones becoming weak due to being inactive (very long story). Now I’m unable to walk at all and can only stand long enough aided to transfer. I was just wondering how you cope mentally? I’ve done the acceptance bit, but it still frustrates me. It’s early days for me it’s only been six months but I know it’s the end of the road for mobility as I’m now a full time wheelie. Jactac please don’t feel you’re invading. I would also appreciate anybody else’s views. Linda x

Hi Linda,

You touched on the “acceptance thing”, well for me I dont think I can accept it, I keep pushing my mobility to its limits, to a point where I literally cannot go any further, I know I’m doing it but I just cant accept that I cant do the things that I used to be able to do.

I’ve been told so many times that I should space my mobility out, taking regular rests, sitting down then going again for a little while, but time and time again I will just “go for it”, it’s like my head is saying you WILL NOT beat me, but it bloody does every sodding time !!!

I do worry that pushing myself physically might be doing more physical harm than good, making the MS worse for instance ?

I think It’s doing more mental harm because each time I “crash” physically I have to admit defeat, which in turn gets me down mentally.

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Hi Jactac, yeah know exactly where your coming from. I was exactly the same, it took me 15 years to accept what was going on and it was only when things started getting bad and there was no coming back from each episode. Everyone kept telling me “don’t be so hard on yourself” when I kept pushing to the limit. In the end I had to accept that I’m not going to beat this disease, it will always win so I had to give in and accept it. Believe me it does play with you mentally.I don’t know if you’ve gone down the anti depressant route, I did and that really didn’t help or suit me so after trying it I came off them and went for cognitive behavioural therapy with my counsellor -CBT (which you get on the NHS). It’s mental re-tuning really and that helped me get my thought process in order (my counsellor even told me I’m too hard on myself). I still have bad bits mentally but I come back from them a bit quicker. I now can’t swim 3 miles a week, do gym 3 times a week, dance, do everything in 4 inch stilettos. In the last year my mobility has become less and less and am now in a wheelchair and can only stand to transfer. Yes I’m bitter, but this is the card we’ve been dealt with and our lives are never going to be the same! PM me if you want and I’ll try to explain further. Keep positive and “don’t be so hard on yourself”. Linda x

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Hi Linda and Jac.

It`s fine for you to ask about HSP, I really dont mind. In fact HSP does need airing more, as it is so little known. It stands for hereditary spastic paraplegia. We know of no-one in my family who I could have inherited it from.

Of course I`d never heard of it either, until I got the label!

I asked the neuro why they replaced PPMS with HSP as a diagnosis. They said I was too well!!!

So here`s an explanation and a couple of facts…

HSP is genetic and carries a 50% chance of being passed to your offspring (aahhh!)

Just 1 in 100,00 people have it.

It is incurable and there`s no treatment to slow or reduce disability.

There are 2 types of HSP…pure and complicated.

Pure is my type.

It only affects the lower half of the body.

Sufferers are often born with mobility problems from the word go. I was 45 before it hit.

But not everyone needs a wheelchair.

Bladder, bowels and fatigue are common problems.

I was tested for MS, HIV, Tropical HSP, Lupus, Tumours, Sticky blood syndrome, nowt left but HSP.

I had a gentic test last year, which came back negative for HSP…but that is often the case.

I honestly dont know if I`ll ever know for sure what the problem is.

My mental state seems to cope without becoming clinically depressed. Of course I get fed up and totally loath the baxxtard!

I`ve lost so much of my independence but have a good support system in place.

I guess it helps that I was always bubbly, feisty and out there!!!

Keep going lasses, there`s still a lot of good stuff to enjoy in life.

pollsx

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Thanks for the write up Boudica.

Why cant we all just be fixed and “normal” eh !!!