Hi. Yesterday the neurologist said i have MS.I was surprised as though for months i thought i had, i also knew there were many other things it could be, and then after reading everyones posts on the forum, I was convinced that I would be told more tests were needed, but no, she told me I had ms, that there were lesions on my brain, a big difference, (as in compared to what is a normal brain image as have only had 1 mri done), and even moreso on spinal cord.So if I have been told it is MS, why do i need it confirmed with a lumbar puncture or does that fluid hold answers to other things that need to be known. Very scared at the thought of this.Anywhere else on my spine but that area.I don’t think I can go through with it.Not being a drama queen and im hanging onto the words that someone told me that she is tender to the touch in that lumbar region too but that it wasnt so bad.I am scared i jump if they hit a nerve.and even though I’ve only been going through this a relatively short period, I feel ive been through enough for the time being. :0(
LP gives the proper diagnoses that’s all I know the liquid taken and tested confirms it hope this helps x
Well, I really wanted someone to say “no you dont have to get it done Andie”, but I guess thats not going to happen. I think I will go speak to my GP tomorrow.
I was led to believe that it had to be done to confirm a diagnosis, but she told me yesterday that I have MS, no doubt about it and she was sorry to have to tell me, so although we talked about the LP, well, she talked about it, i just cried and said “wow” as was in total disbelief…i now feel a bit confused as to why it is necessary.
Thank you xx
Well Andie I’m going to say if you have been diagnosed there is no need to get an LP; it is only to satisfy their morbid curiosity and to cross all their I’s and dot all their T’s; absolutely no requirement; an LP is purely a diagnostic tool.
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. There are a few rare but serious side-effects of spinal taps. For more information about spinal taps and how to reduce the possibility of some of the more unpleasant side-effects follow this link: Spinal Tap.
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.
However, CSF analysis technology is still advancing and researchers continue to look for definitive molecular markers of MS. Should they find such a marker, spinal taps will reassume their importance. Other researchers are looking into urine and blood for markers and we can hope that they are successful and spinal taps become completely unnecessary to the diagnosis of multiple sclerosis.
If you still go ahead 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; this is rare.
I was diagnosed without it - so were quite a few people here. The NICE guidelines in fact suggest it should now be the exception, rather than the rule, and only used where other evidence is inconclusive. But for some reason, 99% of neuros still seem to go with it as standard. You do not have to have any medical procedure you don’t want, so at the very least, I think you should query what will be gained by having it. In particular, what would happen if it’s normal? Would she then change her mind about there being “no doubt”? I thought I might get forced into having one to satisfy the insurance company (critical illness insurance), but they did not quibble at all about a diagnosis without one, so they cannot have thought it left any serious questionmark over the diagnosis, otherwise I’m sure they’d have seized on it. I think, when the insurance Co. paid out was when I began to accept the evidence must be pretty clearcut, and nobody was going to get back to me saying there’d been a mistake. Tina x
I only had one because they couldnt dx MS from MRI. As the LP was clear of those immune bands I still have no dx. If they try to talk you into it then ask what happens if negative - will they change the DX.
Wow everyone.THANK YOU for all the info and your own stories…I can’t think of the word I need. Right, I am most certainly going to see my doctor tomorrow. I would have this procedure done if my back wasnt tender like it is.I have no problem with pain, but it makes me jump and is painful when that part of my back is touched.I sat down not long ago and the wooden band on the back of the chair was just at the level of that part of my back and i jumped out the chair like id sat on a pin. If it felt like the rest of my spine, no problem, but no, why put us through it if we dont need it.A lady i know near me had it done as she didnt believe the mri but she told me it didnt need to be done nowadays as much as can be told from mris.Jeez, so much to take in. Going to let my husband read all this. Thank you so much.
One last question, can emotion affect your symptoms too? I got into neurologists room ok yesterday, just a little off balance, but when i left i could hardly put one foot infront of the other xx
Yes, stress can definitely exacerbate symptoms - but don’t worry, it’s not actually causing new damage, just making the effects of existing damage more noticeable. Sometimes, even stress in its positive version - excitement - can make me quite shaky.
I was told that it was MS for sure, but that the neuro liked to have a full baseline picture at the time of dx, so wanted to do an LP for completeness. So that is what I did - it was fine, by the way - but I think the dx would have been secure without it. No one will make you have one if you don’t want to. Alison
I wouldnt hesitate if it was anywhere else on my spine, but no, no wqy, not there where they have to do it and as it was a definite diagnosis, its a definite no no.
Thank you everyone.
I have another question.Ice cold feet a problem for anyone? its nothing painful to me, just a noticeable change that im curious about.x
i get terribly bad cold feet and it feels like a get a small tremor that i cant explain throughout my body,and when they warn up they feel like bubble…strange feet lol
Are your feet actually cold - e.g. if you touch them with your fingers (assuming they’re unaffected), or if another person touches them, do they feel cold? Or is it just the sensation that they are?
I ask, because the numbness caused by lack of nerve signals getting through can often be mistaken for cold. Your brain tries to make sense of what it’s feeling (or NOT feeling) in terms of what it knows about the real world, and everyday experiences. It knows that if your feet get very cold, they feel numb, and that this is normal. So it may apply reverse logic: “Hmmm, my feet feel numb - they must be very cold!”
Instead of thinking: “something’s gone wrong”, your brain will try to come up with a rational explanation, if there is one.
our bodies are bloody amazing, even when they are going wrong, its all just so weird and amazing.
They do sometimes feel cold, but yes, it has been cold recently, but sometimes they feel icy cold but feel ok, just noticing a few different little things, so just kinda keeping upto date with things as have no idea about all this.
Thank you x
Mine are cold a lot and when I touch them there freezing lol been like this for a year but they are warm when I’m wrapped up in bed hands cold a lot too and stiff.
I was diagnosed with ms last January just from my mri scan. I had the lead neuro from Southampton (now retired). Anyway, he still said he would like an lp so it could go on my records. I thought I would be brave which I was, but it was not nice for me. I will be honest with you but then that is my experience and others fly through it. I had 5 attempts in both lying down and sitting up hunched over and it was unsecessful as they couldn’t get the lp needle in the right place even after using a longer one.
Well that was it I refused to have it re done and said I already had my diagnosis. All was fine and I had no pressure to have it re done. My critical illness paid out with no problems.
Eeeh Dawn, well, I have managed to get in with my doctor today so I have thought long and hard about it and I am not having it done. Bloody cruel if you don’t need to have it done. thank you for sharing.xx
Alysea, im going to dust off my foot spa!xx
How long for MRI results had mine this week.
I had my mri on 1st may and results on 27th may.x
Wow - thank you for that explanation, George. When I was tentatively diagnosed 20 years ago my neuro told me that a LP would normally be undertaken, but as I was fit and healthy and seemed to not have serious symptoms, he told me to go away and live life to the full and not dwell on things.
It worked up until 18 months ago, too.