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LP unsuccessful

Hi,

just an update, my LP today was a disaster, my spine was not straight enough to do lying down, so i was asked to sit up, which was better for me. But the spaces between the vertabra’s was to narrow due to the spondilytis. They did manage to get a couple of needles in but could not get any fluid. they are recommending I have another with x-rays so they can see exactly where the needle can go. I am going to decline, once was enough. Seeing Neuro on the 15th Aug, so i am not sure what he will say. They did ask me alot of questions about CJD though. so we shall see

x

Hi Medion,

I’m sorry you’ve had this deeply unpleasant experience.

I never agreed to an LP in the first place, so I can’t say I know what it’s like, but I can certainly understand you not wanting another try!

On the positive side, an LP isn’t essential to diagnosis, in the vast majority of cases, and there’s a chance it may not help either way (which was one of the reasons I refused - what’s the point of an invasive test that may not take you forward?). I did go on to be diagnosed, even though I had declined - it just took a little longer, as they needed to be more sure of the other evidence (which wasn’t long in coming…)

Bit concerned they started quizzing you about CJD, though. That’s one of the things I thought I might have, when I was first being investigated, and I was doing a mental inventory of all the burgers or dodgy pies I might have eaten, my whole life - an impossible task!

Nobody ever asked me about it, though, and I never thought to mention it to them either, as it seemed by then they were on the trail of something else…

Tina

x

thanks Tina for your feedback.

LP was not for me, I should have trusted my own instincts and not proceeded. I always have to learn the hard way. The CJD questions where odd and the nurse had said she had not asked these questions for a long time. It was question like … the usual you would expect such as blood transfusions back in the eighties etc then questions like has anybody told you in the past that you may have CJD…very wierd. My MRI and EP tests are all normal so I Quizzed the doctor as to why I should still need a LP and she just said the Neurolgist will explain everything when I see him on the 15th August. But the nurse mentioned they where looking at my MRI’s before coming into the room. Not sure if I am reading to hard into things. One thing CJD is very fast acting and my symptoms have progressed since 2006.

Catherine x

ps I was brought up in a chip shop, so I have eaten plenty of Meat Pie’s

Hi Catherine,

I remember reasoning exactly the same as you! At one point the possibility was raised that I might have another nasty, that was, if anything, even worse than MS!

When I researched the horrid other thing, I discovered the likely prognosis, if left untreated, was five months! The chances of my having survived it untreated for years, without even one emergency admission to hospital were slight, to say the least. So I pretty quickly concluded that either I’m a medical miracle, or that’s NOT what I’ve got!

I think, sometimes, they come out with these things, without thinking of the effect on the patient, or how very unlikely it would be that they’ve already survived them for years, without any treatment.

I can only judge through the medium of the computer, but your typing and reasoning seem faultless. Could that even be possible, I wonder, if you’d had CJD for almost seven years? I’m inclined to think it’s piffle, but I suppose they can’t leave any stone unturned.

Tina

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Hi, just picking up on what you and Tina have been discussing ie strange questions and CJD…

when the mad cow pictures of cows falling were first aired, I also wondered if that was what was causing my falls! Thank heavens it wasnt!

An odd question I had to give a quick answer to, was when I first went for respite in a hospice.

The doctor admitting me asked if I should have a coronary collapse, did I want resussitating???

Of course I said I would. Then I was asked why…?

I quickly said Because I am young and have a family and grandchildren to see grow up.

I never told my family that I had been asked this question or they would`ve stopped me going there.

About your LP…i`ve had 2 and found them both very painful…unlike most folk. They didnt help with any diagnosis.

pollxx

thanks for both of your feedback, its all very interesting whats going on out there.

I will keep you updated.

People may remember my disastrous lp! It was last year and it took 32 attempts and 3 different specialists! The last specialist came and after the second attempt from him he said that if he couldn’t get it the next time then they would have to arrange for me to come back and have an X-ray guided lp. To that comment from him I made it perfectly clear that there was no ifs or buts about it he was going to get it on this attempt as there was no way in hell that I was coming back and going through it all again!! Thankfully he did manage to get it that time but I can honestly say that of he hasn’t then I wouldn’t have gone back. My dad was with me through the procedure and he couldn’t believe how well I was doing as it was clear I was in excruciating pain and I looked like I was going to pass out at any point! When my neurologist heard about the disaster lp situation he turned round and said that he would diagnosis people without it as the lp can be inconclusive anyway due to oglioclonal bands being present in other autoimmune conditions anyway. By the way it should have originally really been an X-ray guided lp as I have scoliosis which they were prewarned about - also found out last week that I also have problems with the discs in my spine

thanks for sharing Karina1980 and sorry to hear you had a bad time too.

x

Just make sure you emphasise to your neurologist that is it really a necessary procedure - many people are diagnosed without one

Hiya, You’re not alone here hun. I had a lp that failed and point blank refused another! After 2 attempts the registrar injected anaesthetic deeper! Then called for another doctor who ordered a longer lp needle. I must of had 15 locals in between the 5 attempts and the 2 different positions. The pain was awful beyond belief. After, they sent me on my way in tears with my crutches hardly able to walk. I had the worst backache ever for 4 days and the puncture wounds oozed and scabbed, I still have a scar. I was diagnosed from the mri. Some people fly through their lp’d. Not so for me but at least I gave it a go. Good luck hun, stick by your guns you know your own body and limits. Dawn xxx

thanks Dawn, you have all made me feel much better and glad I made the decision I did.

xx