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Life-limiting illness

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Original poster

Ankylosing spondylitis

12 replies

mandmsmummy · 21/03/2013 16:00

Hi all
Advice needed as I'm scared...
Just been diagnosed with AS, had back pain for over a year and am really scared about what this means for me. I'm 37, does this mean I will be in a wheelchair or am I over reacting?

OP posts:

PanpiperAtTheGatesOfYawn · 21/03/2013 16:05

Not an expert but didn't want to read and run...

an exbf was diagnosed with AS at university. I am (and he is) your age. He is still walking about and having fun (even playing sports occasionally, he certainly still dances), though obviously he gets a lot of pain which has to be managed, and masses of physio but with the right care no-one would guess.

I think it is one of those conditions which, if managed right, worst case scenarios can be delayed for years.

Hope someone comes on with more direct knoweldge.

Wolfiefan · 21/03/2013 16:07

Bumping with interest.

Original poster

mandmsmummy · 21/03/2013 16:19

Thanks panpiper, good to hear. I've read mixed things, some good some bad but terrified at the thought that life could get very scary for me. I know it's not like I've been giving months to live but it's a horrible feeling knowing that I will never get rid of this just manage it.

OP posts:

Wolfiefan · 21/03/2013 16:21

But well managed should mean better than it has been all year?
Bumping again.

mememummy · 21/03/2013 16:21

My grandad had this. He was never wheel chair bound but had to walk with a stick and later a frame he had a question mark posture his spine became fused together because of this and he struggled with arthritis. He stopped driving at about 68 and died of something unrelated. He was able to look after me and my sister do all the school runs etc what do u want to know I will try to help xx

mememummy · 21/03/2013 16:23

I'm not sure but I believed AS only effected men xx

Wolfiefan · 21/03/2013 16:26

It does affect women too. I believe it is more common in men.

mememummy · 21/03/2013 16:29

You learn something new everyday

Original poster

mandmsmummy · 21/03/2013 17:39

Thanks all.
Yes my understanding is its more common in men but does affect women too. I'm just interested in any info really, have visions of being in a wheelchair at a young age. I'm 37, had pain that has built up over 14 months and worse when still and trying to move again. I'm aware of it all the time which I can't then get peace from. Will know more next weds but like to ask for advice from mumsnet members as it really helps. X

OP posts:

barbarianoftheuniverse · 21/03/2013 18:01

Don't be scared! I have had it since 22, am 53 now, still walking the hills. My father had it and was still mobile at 80.

In a rush, but really, it's not so bad.

Original poster

mandmsmummy · 21/03/2013 21:09

Thanks barbarian! Nice to know its not all doom and gloom x

OP posts:

Original poster

mandmsmummy · 01/10/2013 17:04

Reviving this thread, I have costochondritis linked to as apparently. Really scares me when I can't get my breath too well. Anyone else experiencing this x

OP posts:

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