Afternoon each. Innit clammy and close…keep putting the washing out, fetching it in…on airer…sunshine now…oh I am fed up of it.
Anyroad, reason for my post. This was a surprise.
Had a call this morning, from MS nurse.
She reads a letter from Dr Lily out to me. Said I shouldve had a copy, but I havent yet.
It went along the lines of;
Dr Lily has recommended to neuros at Halifax that they should repeat my LP. To look for oligoclonal bands for MS…I may have spelt it wrong, but you know what I mean, eh?
Then if none show, go for genetic testing for HSP.
we discussed my recent letter about an EMG test done 15 months ago, which left the neuro feeling myleopathy could be another possible diagnosis.
There`s an 8 week wait for the LP. I told her how painful it was before, That was at a different hospital about 13 years ago, when nothing was found.
Poll this is great news! Yes still on there radar and doing more tests! Please God you get a dx out of this and please God let it be the PPMS as I know that is so much preferable to HSP.
Sorry you had bad LP before. Maybe things have changed in 13 years… I had it easy with mine. Anyway hon worth biting the bullet as it might lead to dx. 13 years is a hell of a long time.
Thanks Pat. A friend of mine, who has HSP was dxd by an LP. ive just googled the topic and see that LP is used for MS and HSP dx
Hopefully my LP won`t be as horrendous as the first. I recall the doctor who did it. He looked about 15, was very good looking and had a pierced tongue!
So Poll youve to be pricked and punctured until they find a probable diagnosis. Im glad your not off their radar only its all taking time and why on earth didnt they let you know? As youve said they should have sent you a letter so your kept in the loop, after all your the PATIENT!
At least you know now luv, try look forward with the possibility a diagnosis may at last be in your sights.
i hope you get some answers soon. youve waited ong enough.
just in case you dont, have you been tested for leukodystrophy??
the reason i ask is because someone i know in her 40’s has been diagnosed with one form of it (dont know which one), but her syptoms are scarily ms like. it never appeared in childhood, just only over the last few years. it is very rare but maybe worth asking about if you get no answers?
its 17 years since i had a lp. i do believe the procedure has improved greatly now thank god! wishing you all the best.
Great news Polly, I hope it leads to something as I know the not knowing is horrendous. I know we are all different but my lumber puncture was easy. It was done by a lovely polish doctor who talked to me the whole way through about her lack of love life and the search for a boyfriendmin Liverpool. I know that sounds like a ridiculous conversation to be having during this procedure but she took my mind off it and it was finished quite quickly. Best of luck with it, ps lost another lb this week! Chis
Hey, that is good news. At least you have not been forgotten and put to the bottom of the pile!!!
There was an article about the needles used for LP’s. The new needle costs about £13. and the NHS one £7.oo. Guess which one is used. I was lucky! Had 2 junior docs who coulod not do it and then the senior doc took over. Although she looked 20!! Rested for the required hours and had no headaches or pain after!
Al least after all these years you might be getting somehwere to a dx!!!
That is good news, don’t be put off by my experience in my other post as I was wound tighter than Mr stress on a very stressful day and was having back spasms - the Consultant who had travelled down from London and was very nice to me (I would have got a lolly pop if i’d been 25 years younger) in order to carry out the LP was hessitant to continue with the muscle spasms but I wanted to get it out the way and told her to continue regardless.
Not only did this mean that I finally got my DX but also she found the tremors that my local Doc’s did not/could not find plus a few other elements that could have gone undetected…also she then took it upon herself to read the riot act to my local MS consultant for not giving me meds for my “Vacant moments” which had left me in some very strange situations.
I layed flat for 3 hours in the Hospital then was discharge and took it very easy for two days and did not get the Headache which i had been dreading due to a history of migraines - and other than a little bruise-like feeling felt absolutey fine.
Hope it all goes well and you get the answers that you need.
Hi Poll, like you fourteen years in and out of limbo. I’ve been with a neurogenetics team for two years. I had lots of blood tests for genetic disorders especially HSP two years ago. Then they decided as I’d had previous ON twice it was inflammatory and last year tested me for neuromyelitis optica.
I’ve just received a letter which states probable autosomal optic atrophy with spastic paraplegia and ataxia. They are now also interested in my brother so they can compare his DNA to mine. I’ve just been tested for SPG4 and I’m waiting for a muscle biopsy to rule out a couple of things.
If you go the neurogenetics route it takes a long time to get a diagnosis. I only have yearly appointments as they take a watch and see approach as this is often the only way they can be certain of a diagnosis.
Hi Poll, like you fourteen years in and out of limbo. I’ve been with a neurogenetics team for two years. I had lots of blood tests for genetic disorders especially HSP two years ago. Then they decided as I’d had previous ON twice it was inflammatory and last year tested me for neuromyelitis optica.
I’ve just received a letter which states probable autosomal optic atrophy with spastic paraplegia and ataxia. They are now also interested in my brother so they can compare his DNA to mine. I’ve just been tested for SPG4 and I’m waiting for a muscle biopsy to rule out a couple of things.
If you go the neurogenetics route it takes a long time to get a diagnosis. I only have yearly appointments as they take a watch and see approach as this is often the only way they can be certain of a diagnosis.
Hi Poll, like you fourteen years in and out of limbo. I’ve been with a neurogenetics team for two years. I had lots of blood tests for genetic disorders especially HSP two years ago. Then they decided as I’d had previous ON twice it was inflammatory and last year tested me for neuromyelitis optica.
I’ve just received a letter which states probable autosomal optic atrophy with spastic paraplegia and ataxia. They are now also interested in my brother so they can compare his DNA to mine. I’ve just been tested for SPG4 and I’m waiting for a muscle biopsy to rule out a couple of things.
If you go the neurogenetics route it takes a long time to get a diagnosis. I only have yearly appointments as they take a watch and see approach as this is often the only way they can be certain of a diagnosis.
Hi Poll, like you fourteen years in and out of limbo. I’ve been with a neurogenetics team for two years. I had lots of blood tests for genetic disorders especially HSP two years ago. Then they decided as I’d had previous ON twice it was inflammatory and last year tested me for neuromyelitis optica.
I’ve just received a letter which states probable autosomal optic atrophy with spastic paraplegia and ataxia. They are now also interested in my brother so they can compare his DNA to mine. I’ve just been tested for SPG4 and I’m waiting for a muscle biopsy to rule out a couple of things.
If you go the neurogenetics route it takes a long time to get a diagnosis. I only have yearly appointments as they take a watch and see approach as this is often the only way they can be certain of a diagnosis.
Hi Poll, like you fourteen years in and out of limbo. I’ve been with a neurogenetics team for two years. I had lots of blood tests for genetic disorders especially HSP two years ago. Then they decided as I’d had previous ON twice it was inflammatory and last year tested me for neuromyelitis optica.
I’ve just received a letter which states probable autosomal optic atrophy with spastic paraplegia and ataxia. They are now also interested in my brother so they can compare his DNA to mine. I’ve just been tested for SPG4 and I’m waiting for a muscle biopsy to rule out a couple of things.
If you go the neurogenetics route it takes a long time to get a diagnosis. I only have yearly appointments as they take a watch and see approach as this is often the only way they can be certain of a diagnosis.
Hi Poll, like you fourteen years in and out of limbo. I’ve been with a neurogenetics team for two years. I had lots of blood tests for genetic disorders especially HSP two years ago. Then they decided as I’d had previous ON twice it was inflammatory and last year tested me for neuromyelitis optica.
I’ve just received a letter which states probable autosomal optic atrophy with spastic paraplegia and ataxia. They are now also interested in my brother so they can compare his DNA to mine. I’ve just been tested for SPG4 and I’m waiting for a muscle biopsy to rule out a couple of things.
If you go the neurogenetics route it takes a long time to get a diagnosis. I only have yearly appointments as they take a watch and see approach as this is often the only way they can be certain of a diagnosis.