Hi everyone. I`ve been a limbolander for several years and have finally got a diagnosis. Albeit not a total total one, but one that will do for me.
I`ve spent too long in the ??? rooms and am at last feeling calm and peaceful with my dx. I feel I am now able to move on.
If anyone is interested to read about this, i`ve posted it on el.
I received many lovely replies and so I`ve added another and hope that some of you may find some of it helpful for your time in limbo.
luv Pollx
Like I said Poll, you are a real STAR, always thinking of others.
Janet
x
Hello Poll, I read your post and felt relieved for you that you have finally after all these years had a decent conversation with a Neuro! Will anything about your care/treatment alter at all? I am so glad you are staying, your posts are great and people like me need you here xx Sam xx
Hi Sam and Janet (some enchanted evening joke springs to mind!)
Cheers for your replies.
I am happy with my dx and can at last settle my mind. Chuff knows what the future will bring for my family…just pray it doesnt hamper their lives, but if it does, there`s sod all anyone can do about it.
Oh, hang on a mo…yeh, there is FES…a walking aid which could keep `em out of a wheelie.i never knew about it in my early days.
As far as my treatment goes, nothing new or different, so continue being a druggie I guess!!! Without the baclofen and amitriptyline, Id be climbing the walls in pain. Taint all bad.
We just have to live our lives the best way we can, eh?
much luv, Polly xxx
Hi Polly, finally a diagnosis! I have looked up your condition and its pretty amazing what they know now right down to genetics and faulty genes…and after all this time. It’s mixed emotions really because it must be a relief to finally know but another thing to come to terms with. Still reading your post you are your usual perky self about it. So pleased you are staying as you are such an inspiration to us all. From a continuing Limbolander xx
Hi Poll
So glad you’ve finally got a diagnosis, of sorts! So have I. It’s a bit woolly, but it could be worse!
Its been a very long haul for you, I hope a little bit of that weight has been lifted from your shoulders at last.
Keep smiling Polly, you’re an inspiration to us all xxx
Hi Poll
So pleased about your diagnosis - and that you’re seem so relieved/relaxed/happy about it all. I’m not sure many could come through the long process you’ve been through and still come out with such a positive attitude. You really are an inspiriation and even though I’ve only been around here for a short time, I know what a big deal this is for you. I hope you don’t mind me saying that I’m hoping my diagnosis doesn’t take 14 years, but if it does I hope that I cope with it with even a fraction of your good grace and attitude. (That made sense in my head, if it doesn’t on paper, then it’s a compliment. Honest!)
Thanks, yeh, I did take your comment as a compliment…a luvly one! I know just what you mean.
luv Pollx
Hi, so what dx have you got then? I`d like to hear all about it, please.
luv Pollx
Hi Kirstie, ta for your reply hun.
ISP was mentioned first in 2010, as HSP (hope you`re following me with this). Back then it did throw me all over the place. I felt dirty, somehow, that I could pass something so horrible on to my family.
But 2 years on, I know it isnt my fault and there`s not a jot anyone can do about it.
I suppose i`ve been my own counsellor, and worked my way through it.
I did try going to a professional counsellor and all she seemed interested in was how it affected my sex life! She mustve had problems of her own in that department, eh? Are you old enough to remember a tv comedy prog called Dear John`? it was on very similar lines.
luv Pollx