Hi folks Just a quick question…had my 3rd neuro apt today, the c spine and blood work was all clear, I have 15 foci in frontal and parental lobes in the deep white matter. He is now sending me for a lumbar puncture and confirmed that he is testing for ms, he said that the foci may or may not be relevant and this may or may not be neurological. Will the lumbar puncture show if I’ve ms or not, I have a family member who’s lumbar puncture was clear so I’m a bit confused now. I had so much I wanted to say but every apt I seem to freeze
What I understand is that the majority of people with MS have positive lumbar puncture results but a minority don’t. I would suggest that you read the brilliant sticky post on this board by Rizzo called “A beginner’s guide to the brain” - it’s quite along read but it is very, VERY useful. I would also look up the (updated) Mcdonald criteria for diagnosis of MS which explains what has to be observed to allow a diagnosis. The WIKIPEDIA page is very good and free of pointless comments and misinformation that you find on some sites.
Here is some advice about LP.
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.
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.
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.
Hi George, thank you so much for your reply it has really helped!!!
I believe the LP is not to confirm MS but to discount everything else. I had loads of oglical bands in my CSF when i had my LP, sounds great which is what you would expect for MS, yet I was told it was negative. Why? Because alongside the LP you have to have a specific blood test and the blood test revealed inflammation in my blood, which negates the LP findings.
Now at the time i was ill so I said to the neuro could this just be a coincidence and he said yes, but protocal says they have to say the LP is negative for MS.
He said it actually muddied the waters, and this is why it took so long for me to get my MS diagnosis. I got it after a second positive VEP test (i had lots of MRI with different lesions in different places, but still no diagnosis, until the last VEP test showed again slowing in the brain left side), ON.
Hi folks, I too had lesions in areas of my brain but also had a negative LP and VEP which really has made me feel very down as I have terribly bad burning pins and needles in my legs. I am now off for another MRI but after looking at the Macdonald criteria I am still confused and wonder if there are new lesions then will I be diagnosed. I am so fed up and worried but really want to move on and deal with this issue head first.
I was diagnosed with RRMS a month ago and due to have a lumbar puncture next Wednesday.
I have been so nervous but after finding your response and advice here I would just like to say thank you as although I am still nervous I feel a little at ease now.
I will be taking next Wednesday off work for procedure and resting the remainder of day but now slightly worried it may be longer as I work Mon to Fri 9-5. I will be taking the rest of the days as they come and see how I feel.
My neuro also wrote a list of medications for me to research and said because he will be doing the lumbar puncture, we will discuss what one I would be comfortable with. Tablets, injections or Lemtrada infusion. I am steering towards the Tecfidera.
JCT, I hope you get some answers either way as I know I am the same walking out an appt and then remember all the questions I never asked. Maybe write a list of them for next one? That’s what I will be doing : )
Tanya was asking about LPs today so just commenting to bump it to the top, great description by George.
JTCallaghan hope yours goes ok, let us know.
Hi folks just to let you all know how I got on…the L.P. was grand, no issues at all I had a great lady doing it and it was painless…they let me up straight after it and few cans of Red Bull later it was forgotten about. Anyone reading this about to go for one please don’t worry about it and red bull is a must. Had L.P. on 12th Oct and received letter last Sat to attend Neuro apt but had call yesterday to say it was cancelled and would be rearranged sometime before Christmas…gutted. Hope everyone is doing well!!!