This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello everybody-

I had my second spinal tap last weekend and have since written a post about the procedure and my advice for making it as painless and easy as possible! It's a bit on the long side, though, so here's the link to it if you're interested:

http://bumpymsadventures.blogspot.com/2012/12/spinal-taps-lumbar-punctures.html

Thanks so much and a Happy, Healthy New Year to everyone!

So happy to hear its not that painful....I have mine on Thur and I am so nervous. I see your doctor is in NYC, is it Sadiq?

Yes! Dr. Sadiq is my neurologist, but Dr. Williams usually does the spinal tap procedures. He does a wonderful job! Good luck!

Hi,
Can I ask what the results showed on the spinal taps you've had as mine were clear ?

Happy new year.

Well, I haven't gotten my results for this latest tap back yet as it's being run through many more tests at the MS Research Center of NY, including a test for one of the new genes that practice believes is one part of the cause of MS. However, most neurologists are looking for those oligoclonal bands that are indicative of MS in the cerebrospinal fluid (CSF). Most (80-90%, I think) MS patients have this banding. I was positive for this banding with my first spinal tap back in early 2011. They can also look for markers of other demyelinating diseases or infections like meningitis from your CSF sample. I get the results from the most recent procedure in Mid-January and will let you know about any additional information I get from those!

May I ask why you have so many spinal taps? Usually you only need one spinal tap, especially since nobody can diagnose MS based on the result of a spinal tap only. There have to be a combination of tests, MRI, EEG, spinal tap and many more before anyone can diagnose MS. Spinal taps may not necessarily hurt very much but if they draw fluids from your brain you may experience major headaches etc.

I've only had 2 taps. The first one I had was performed during my initial onset of symptoms in 2011 by a basic neurologist, not one who specialized in MS. And yes, I had about 8 different MRI scans done during that initial period, and now get one every 6 months. My new neurologist is the director of the International Multiple Sclerosis Practice and MS Research Center of NY. They feel that they are quite close to finding the cause of MS and have found that the spinal fluid has offered more information than many neurologists look for. They can create a more precise patient disease profile through examining the CSF, as well as look for possible disease markers. The first tap I had done was done quite poorly and I could not get out of bed for 2 weeks as a result of the post spinal headache and back pain. At this particular clinic, they use a significantly smaller needle which drastically reduces the chance of the headache occurring. And while I have had EEGs in the past, they have only been to look for various seizure disorders. None of the three MS specialists I've seen have ever used EEG to diagnose MS.

Is it unusual to have a clear / negative lumber puncture result whilst having had an MS diagnosis, my neuro always proclaims that I am a difficult case to read but was still keen to put me on Tysabri within a month of being diagnosed ?

The headaches usually come from not laying still after the procedure. You should not lift your head up high, don't move around just lay still. There is no necessity to have MRI's every 6 months. I am very surprised to hear that your doctor is telling you that they are close to finding a cure. That is simply not true. No one has found a cure for MS yet. If that was the case we all would be in good shape. You do not need to expose yourself to unnecessary tortures. You can find all type of valuable information on the National MS Society's website. Check there for information about diagnosing MS.

MELVIRA, I had no headache with the most recent procedure. It was neither unnecessary, nor torturous. Is you had read any of what I've written clearly, you would have known that I had no issues with the procedure. My new doctor simply wished to run more tests than many other neurologists do and has the means and facility to do so. If you do get a headache after the procedure, it is usually from not laying supine (flat) and CSF leaking from a section of the dura. It has to do with your spine being horizontal, not from the moving around. Unless you are a doctor and are familiar with the details of my specific case, you don't know that I shouldn't be getting MRI's every six months. I have a serious case of RRMS. I had a clean MRI following a seizure 13 months before my diagnosis which showed 5 massive 5+ cm lesions affecting every lobe of my brain and crossing the corpus callosum in two places. Every patient is different. I am still fairly recently diagnosed and my doctor at the IMSMP is considered one of, if not the best MS specialist around. If you had read my post properly, you would have also seen that I never said they were close to finding the cure, but that they were close to finding a part of one cause of MS. There is obviously a huge step between the cause and the cure of any disease, so please do not misquote anything that I have said. There is hope, researchers are making progress in finding the cause. That's a good thing, no need to be so negative. Also, the National MS Society isn't the most reliable organization around. Many donations don't go towards research, they've promised practices like mine millions of dollars toward stem cell research regarding MS and have never delivered. Speaking with the researchers, doctors, and nurses in the MS community is the best way to get information.

Zac, while most patients with MS have permanent oligoclonal bands, something like 10-15% don't have them. I actually haven't met anyone yet who hasn't had the banding, but has a diagnosis, so I'm probably not the best person to ask about your case. Sorry about that. How has the Tysabri worked for you, if you don't ming me asking?

kaebean: Sorry, I did not want to upset you. I have been diagnosed with MS in 1996. I have been through a lot of everything and I also read a lot. I also attend MS conferences and workshops. I consider myself knowledgeable. Finding the cause of MS means knowing how to cure MS! I wish you well.

I'm sorry I went off a bit. The last thing I want when I am trying to help others is to be misread or misquoted, and as a result, misunderstood. All I have said is that they believe they have found one factor of one cause of the disease. I never said that they found the cause, merely that they feel that they are getting a bit closer and that they key to fully discovering it is in the spinal fluid. I also get frustrated when people forget that someone else could be at a very different stage of treatment or has a different level of severity of symptoms, when getting a certain number of MRIs in the course of two years isn't unheard of. I happened to be neglected by my first neurologist to the point where my lesions were behaving like brain tumors and I was blind for over two months. Obviously not everyone goes through that. So, my new neuro is keeping close eye on my improvement with my new treatment. We're not all the same, right? And neither are our doctors. They all come from different schools of thought and methodologies. I am not preaching to people that they should be getting these tests done more regularly. I'm lucky enough to be receiving treatment at what is considered one of the most advanced MS research clinics in the world, and attend many top notch patient education symposiums. I am not trying to suggest that I am somehow more knowledgeable than anyone else with MS. I am just offering a hand to offer support and advice to anyone who could be anxious or interested in the lumbar puncture procedure. I have been through two very different spinal tap experiences and, as many people do only get one, I feel like I may be able to offer a unique perspective on the matter. Happy New Year and best of luck on your MS journey!

Had my spinal with Dr Williams yesterday...I was so nervous and it was nothing! He really is great!

I'm glad it went so well! He really knows what he's doing!