Hello all I’ve been staying away as I’ve just been trying to make the most of feeling normal (or a normal as I’ll probably ever be), but I’ve been thinking about you all and trying to keep up with what’s been happening. I’m just after a bit of advice now please. Quick recap - I was diagnosed with MS in April (privately) based on MRI and clinical history, have now transferred back onto the NHS as my insurance won’t cover a ‘chronic’ illness. Diagnosis was definite enough for my critical illness insurance to pay out without question! NHS consultant wanted to basically re-diagnose me, so I’ve spent the last couple of months having numerous blood tests, repeat MRI etc. The only thing I’m waiting for is the haematology results (looking at Hughes Syndrome, although the consultant was very very negative about this, despite some history of blood problems). Anyway, everything else is as expected - the MRI showed the same lesions as before (which was not surprising as I’d had no relapses in the five months between scans) and nothing else of interest has shown up. Anyway, he now wants me to have a lumbar puncture. I’m not keen - I’m very squeamish and even refused an epidural during a very painful ‘back-to-back’ childbirth!!! I really don’t want to go through anything invasive when I have children to look after and my husband works full time. Can he force me to have this (say by withholding DMDs?). I’ve been diagnosed, nothing else is showing up and I feel that going through a procedure which is not 100% going to prove things one way or the other is not worthwhile. Thanks for reading xxx
Hi Emma I was told I had MS in August but needed LP. I was told I could have diazepam before LP to calm me. But doctor came and call me for LP and I asked for my diazepam to be told I don’t need it. So I was like a baby as I hate needles or anything like that. But after a few heavy breaths I told them to get on with it. They will explain the whole thing before and as they ate doing LP but I told them not to. The LP was fine it didn’t hurt but it is a weird feeling. There was a bit of pain but it’s bearable. The pain from labour is worst . After having my LP I thought to myself “check me out I’ve just had a LP”. Afterwards u lie down for an hour and drink plenty of coke for the next 4 days to avoid headaches.
I agree with you 100%; an LP is unnecessary; especially in your case and is very invasive.
A spinal tap (also known as a lumbar puncture) is a procedure whereby a sample of cerebrospinal fluid (CSF) is taken from close to the spinal cord. At the same time a blood sample is taken usually from the arm and a quantity of blood serum is isolated. Both of these samples are then processed using a technique called electrophoresis. A positive spinal tap will produce oligoclonal bands in the CSF but not in the blood serum. These bands indicate a type of immune system activity. Although uncomfortable, the spinal tap itself is often not too painful, whereas in the period following the tap, the patient may experience dizziness, nausea, vomiting and severe headaches, occasionally for as much as a week.
95% of people with a definite diagnosis of MS exhibit oligoclonal bands on a spinal tap. This may sound impressive but so do 90% of people with Sub-Acute Sclerosing Panencephalitis and 100% of people with Herpes Simplex Encephalitis among other conditions. Positive spinal taps are indicative of an immunological response but they are not diagnostic for a particular condition. That 5% of PwMS do not exhibit oligoclonal banding means that spinal taps neither rule-in nor rule-out MS.
The primary purpose of CSF analysis should be to rule out other conditions than multiple sclerosis. Although they can be highly suggestive of MS, they do not, in themselves, provide definitive disgnosis. Indeed, I myself, was given a definite diagnosis based on medical history, clinical examination, MRI and evoked potential tests - I declined to have a spinal tap.
Before MRI, electrophoresis of spinal fluid played a major role in supporting diagnoses and underpinned the Poser criteria. Now, however, these criteria have become overshadowed by MRI and, if an MRI is positive, the new diagnostic criteria (2001)allow for a definitive diagnosis without laboratory support. The old “Laboratory supported Definite MS” has been dispensed with.
If however you do decide to go ahead this is my usual advice.
The actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.
It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.
These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.
If the headache last more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a nights sleep. See GP; this is rare.
I wouldn’t have it if I were you. It’s not necessary unless the MS diagnosis is in doubt. The key question to ask the neuro is what he will do if you had it and it comes back negative. If he will still confirm MS then why insist on the LP? If he won’t then why not - what else could it be? I should say that LPs are really straightforward these days and hardly anyone has any complications. Plus, if yours was positive (which is likely), you would be able to move on. Karen x
I wouldn’t have it. There is no way you can be forced into having it and your neuro certainly cannot withold DMDs if you refuse a LP.
Even if you didn’t have a definite diagnosis an LP isn’t considered an essential part of the diagnotic work up nowadays. A good neuro can make the diagnosis based on your MRI, history and clinical signs. If all of those are clearly pointing to MS and nothing else is popping up as a possibility then there is absolutely no need to undergo what is after all a medically invasive procedure.
And he cannot legally insist you do so stand firm. It might help to take a friend or a relative with you to the next appointment for some moral support and to make sure you don’t feel bullied.
Oh bother. I meant to add this before posting the above…
A lumbar puncture is also sometimes called a spinal tap. A sample of your cerebrospinal fluid (the fluid that surrounds your brain and spinal cord) is taken using a needle inserted into the area around your spinal cord.
This is done under local anaesthetic, which means that you will be awake but the area that the needle goes into will be numbed. The sample is tested for antibodies, the presence of which means that your immune system has been fighting a disease in your central nervous system.
A lumbar puncture is usually only needed if other tests for MS are inconclusive.
Thank you all for your replies! I’ll definitely be sticking to my decision and will tell my consultant at my next appointment. I’m hoping this will be the appointment where I FINALLY get to sort out DMDs!
Hi Emma, I am in a similar situation, although not diagnosed. I recently refused a LP, felt a bit strange going against my doctors advice but I defintately made the right decision and don’t regret it. With MRI’s so good these days I think things have moved on, why put ourselves through that extra stress?
Good luck with the DMD’s.
I was initially diagnosed in June 2012 by one neurologist who referred me to a MS Specialist in July 2012 but he wouldn’t give me a definitive dx as he wanted to send me for more MRI scans and VEP eye test.
A few weeks ago I had another appointment with the MS Specialist who said he was 99% certain I had RRMS but he wants me to have an LP. He did say why he wanted me to have it but to be honest I didn’t hear as panic set in as I hate needles at the best of times .
I’m now waiting for the appointment to come through and have subsequently been signed off work for another month (been off since 27th May 2012). My symptoms have eased apart from the fatigue and permanent back pain but I’ve got used to it now!
I am really nervous about the LP. Part of me thinks I should just get the LP over with (and after reading some of the posts on this discussion ensure I have bottles and bottles of Coke to hand) as this will then result in getting on the relevant treatment plan for me. There’s also the other part of me that’s wanting to run for the hills and not come back!!!
All the best
Thanks for your replies Vicky and Pen…good to know I’m not the only one with these run-for-the-hills thoughts! I’m sticking to my guns and will be refusing the LP on the basis that I’m already dx’d so what difference will it actually make?! Good luk with yours Pen X