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lp

Hi all. Thanks for all my replies re my forthcoming LP. I have replied to each (I think), but have something further to tell you.

Back in the days when I was told I had HSP, I went to a support group meeting (miles away) where I  met and have stayed close friends with a woman who has had HSP all her life.

She told me she was diagnosed with HSP through a lumber puncture. So it makes sense (to me anyway) that when they are analysing the fluid, they could look for MS and HSP. This would save me going for genetic testing. A set of testing, I am told, is very expensive. Also it would save me having to go to Leeds, waiting more time and having the angst of waiting for results.

I will ring my MS nurse and Monday and air my thoughts.

Do you think they will take any notice and do the easiest and simplest thing? Nah, me niether, but it`s worth a try, eh?

Enjoy your evening and hope you`re lucky with the numbers, if you play.........we do!

luv Pollx 

That makes sense to me to Poll, but I have to say nothing seems to be straight forward or easy!

(Only this week I found out the LP I had done feb 2011 was not tested for the usual O bands.) doh!

I think that once the CSF is collected it should be tested for all possibilities that apply to the patient. I also think that I would be beneficial to keep samples for a period of time, though I can see that this may be costly.

I really hope that you get the answers that you need Poll.

Good luck let us know how you get on.

Ppx

They'd be nuts not to! Sounds brilliant idea to me. Surely they'll do it?!

Have nice evening Poll... yes I play so fingers crossed eh...

Pat x

Sorry Poll, but I reckon if you want proper answers, genetic testing is the way forward.

Maybe I'm over-simplifying, and it can't give definite answers?  But if it can, beats me why it wasn't done ages ago, instead of all this faffing.

Why are you worried about the cost?  You wouldn't be expected to pay, would you?

If I remember rightly, you were a bit reluctant to have tests that might prove it was HSP, because of the implications for your children?

But I think you're at the point now, where you have either to accept you might learn something you'd rather not know, OR put up with the uncertainty forever.

I'm sorry if I'm reading the situation all wrong.  But that's how it looks to me: that you want an answer, but not if it would be the "wrong" one.

I do understand that, but on the bright side, it might show that it is definitely NOT HSP, in which case you could stop worrying about inheritance.  Maybe it has been MS all along?

I think it all comes down to how much you really want/need the answer, even if it could have serious implications for the rest of the family.  If you decide not knowing is better than hearing something bad, then don't have the test.

But if you want certainty at last, I don't think skipping the test will give you that.

Is there any counselling or anything offered with this test?  I would have thought, usually, with genetic testing, there should be counselling about all the pros & cons of knowing versus not knowing, before you decide.

What do other members of the family think?  They must know by now there's a possibility it's an inherited disease?  Would they rather not know, and leave it up to Fate, or do they want and need answers, too?

If the test were positive, would they also be offered testing, and would they accept?  How likely is it that you would have passed it on?  Would there be any advantage to them of knowing?  I.e. can anything be done about it, if it were caught sooner than it was with you?

T.

x

 

 

 

 

Hi Poll, it sounds very sensible to me, good luck with it all. I really hope you get some answers soon. Karen xxxx

Hi Poll, Hope you get the answers very soon. Wish you luck.

Janet

x

Sounds eminently sensible to me too Poll, which of course means that there is probably some reason why it's not possible!

When I had my LP done (Jan 1998), they took extra fluid to store until a test that was being developed for Ehlors Danlos Syndrome was available. I never did have the test done and sometimes wonder if there is a dusty test-tube hidden in a dark corner of Mount Vernon Hospital with my name on it :-)

Karen x

Hi Poll, this sounds a very sensible way to go. Good luck and here’s hoping results will ensue at last.

Teresa xx

Hi Poll 

Sounds sensible to me but since when have MS specialists been sensible?  I think what they offer often comes down to the finances they have available and to the age of the person they are dealing with, and the area you live in. A postcode lottery situation.  So I hope they will do this for you as it would be nice for you to have answers and whatever the outcome I know you'll be able to deal with it as a strong caring woman.

Love, Mary

Phew Tina! A lot of questions and what ifs going on there! But I really do appreciate your well thought out reasonings.

So lets see if I can answer them

  1. Yes, the time has come for me to take whatever test is necessary, in the hope of getting a definite diagnosis.

Whether it be bad like PPMS (which I really do feel is what`s going on with my faulty insides) or HSP, which as you know, is an even worse scenariop for me, as there is a 50/50 chance of me having passed it down to my 2 daughters and 4 grandchildren.

Eldest daughter is having chronic back pain.with a slight mobility problem. But it has been put down to a damaged disc/vertibrae. we don`t think it is HSP…but who can really know, without her being tested too.

  1. Cost. No I am not expected to pay for genetic testing, it`s just that the NHs may decide it is taking too much out of their budget! And yes, I believe there is genetic counselling available. Not asked about that, but have read about it on-line.

  2. What do other members of the family think? This is where things have been a little heated when I have brought the subject up.

Daughter no.1. 40 this year.

She is the one with the back problems. A couple of weeks ago, when she was in real agony (she has seen chiropracters, and a Professor of something). I asked her all about her symtoms and we dont feel it is what I have been like in the past or am like now. She told me to stop fretting about the whole subject and said, Look mum, if I have whatever you have, its not your fault. What will be, will be. She thinks genetic testing is too much to deal with. But I have stressed to her, that if it was HSP, she neednt end up in a wheelchair like me, as there are things like FES, which I was never offered. And anyway, like MSers, HSPers dont all end up losing their mobility. She has always found it difficult to acknowledge her mum not being fully fit and well. I used to hide my walking stick from her, as it seemed to annoy her somehow. When her youngest was begining to walk, aged 13 months, she seemed reluctant to stand on her left leg, her foot curled under and it scared me, but all came right eventually. She is now 10 and is fine. In fact she is a taikwondo champion in her age group!

Daughter no 2. 35 this year.

She is a medical sec and delves into medical stuff, in a way regular folk (!) dont! She has always been keen to get genetic testing. So she is more open to talking about stuff. She isnt showing any signs of anything wrong.

My husband.

He simply hates me googling ANYTHING! He says Ill talk myself into anything. I dont agree!

My sisters.

They have no mobility problems like mine. One of them had a cracked vertibrae a few years ago and had corrective surgery. She`s 90% recovered.

There Tina, Hope I haven`t bored you or anyone else reading this.

Actually, I`ve found it quite therapeutic, typing all this.

Again, thank you for taking time to so carefully consider my situation.

luv Pollxx

Hi karen, its very well timed that you shoudl mention EDS. The girl in the wheelie, in Corrie, who is pregnant, saw her GP and EDS was mentioned. I was always curious to know why she is in a wheelie. So I googled EDs and was horrified to see how horrible it can be. i do think having MS or HSP is a better deal than being dealt the EDS card. Glad you havent got that!

Thanks for your reply.

luv Pollx

Thanks Mary, yeh, whatever it is i`ll deal with it as best I can.

luv Pollx

Hi , your ideas are sound and reasonable. can you get a job as NHS Chief Exec and make everyone do the sensible thing?

luv Pollx

Hi Pat, we can only hope they will.

No luck on the lotto. You?

luv Pollx

Thankyou Karen, for your kind support.

luv Pollx

Cheers Janet. Kind of you to reply with supportive words.

luv Polllx

Hi teresa, thankyou for your support.

luv Pollx

My 8yr old daughter had EDS and its horrible to see her cry in pain and know there is nothing I can do.

Sorry I meant she HAS it, sorry. Should stop posting now.