phone call re LP

Everyday living
1

Morning playmates!

MS nurse returned my call this morning.

I asked if I am on the list for an LP. She said I am and that it should be within 8 weeks, as they have another doc also doing them.

So I told her about my pal with HSP, who was dx`d via an LP. I said would it be possible to test for both MS and HSP with the one LP. She said that was something I should speak to my neuro about.

I guess that means no, as she continued to talk about genetic testing for HSP.

I left it there…too much bother to push the matter, I felt.

luv Pollx

2

Maybe it is outside her remit of knowlage Poll. I think you should still ask the neuro. Maybe they want to do the counciling side of the genetic testing before undertaking any actual testing, as the ramifications may be more difficult if a heredatory disease is found. I know I’m not explaining it well but I know what I a rattling on about. I hope you do? Good luck anyway Ppx

3

Hi Poll,

No, I didn’t find your replies to my post (other thread) boring at all.

Sorry, I didn’t realise I’d bombarded you with so many questions, but I honestly think there’s so much more to this than just which is more convenient for you.

My guess is that you wouldn’t have been put forward for both LP and genetic testing, if LP alone could answer all the questions conclusively.

I obviously don’t know the ins and outs of how your friend with HSP was diagnosed, and I’m not suggesting I disbelieve her when she says it was by LP only. But I’m still guessing that’s not as evidentially sound as having the genetic test.

I think, if you don’t have the test, you’ll still be left with an uncertain diagnosis; that it’s “more likely” one or the other, but still an element of doubt. Would that be any advance on where you are now?

Why do you have to go all the way to Leeds for the genetic test anyway (if I’m remembering your other post right?)

I’ve had genetic testing - for ancestry research, nothing to do with my health - and the test was so simple I didn’t have to go anywhere. It doesn’t even need a blood test. I just had a mouth swab I had to rub on the inside of my cheek, then I dropped it in a little vial of saline they provided, sealed it up, and posted it off. Absolutely no hospital, doctor, or nurse required.

If you would have to go to Leeds in person, I’m assuming it must be because they want to talk to you about it, and not because there’s anything about the test itself that requires specialist medical facilities. The actual testing of the sample is specialist work, of course. But the collecting of it shouldn’t be. It can be done by a blood test too, but the cheek swab works just fine.

Tina

x

4

Hi Pp, yes I do know what you`re trying to say, bless you.

I guess I`ll have to wait and see what occures…again…reckon I could get a gold olympic medal if waiting was a catergory!

luv Pollx

5

[quote=Anitra]

Hi Poll,

No, I didn’t find your replies to my post (other thread) boring at all.

Sorry, I didn’t realise I’d bombarded you with so many questions, but I honestly think there’s so much more to this than just which is more convenient for you.

My guess is that you wouldn’t have been put forward for both LP and genetic testing, if LP alone could answer all the questions conclusively.

I obviously don’t know the ins and outs of how your friend with HSP was diagnosed, and I’m not suggesting I disbelieve her when she says it was by LP only. But I’m still guessing that’s not as evidentially sound as having the genetic test.

I think, if you don’t have the test, you’ll still be left with an uncertain diagnosis; that it’s “more likely” one or the other, but still an element of doubt. Would that be any advance on where you are now?

Why do you have to go all the way to Leeds for the genetic test anyway (if I’m remembering your other post right?)

I’ve had genetic testing - for ancestry research, nothing to do with my health - and the test was so simple I didn’t have to go anywhere. It doesn’t even need a blood test. I just had a mouth swab I had to rub on the inside of my cheek, then I dropped it in a little vial of saline they provided, sealed it up, and posted it off. Absolutely no hospital, doctor, or nurse required.

If you would have to go to Leeds in person, I’m assuming it must be because they want to talk to you about it, and not because there’s anything about the test itself that requires specialist medical facilities. The actual testing of the sample is specialist work, of course. But the collecting of it shouldn’t be. It can be done by a blood test too, but the cheek swab works just fine.

Tina

x

[/quote

Hi Tina, I really do appreciate your input with all this. You take so much time and thought to prepare a reply.

I will have the genetic test if it comes to that, after the LP/MSthingy.

I do believe it will be a blood test. The mouth swab tests does sound easier!

Im not sure, but think I will have to go to Leeds for it. Whether or not counselling will be involved, I dont know.

Watch this space, eh! Thanks once again.

luv Pollx