Lumbar Puncture - New to MS

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
Post Reply
Samiya06
Newbie
Posts: 2
Joined: 2 weeks ago

Lumbar Puncture - New to MS

Post by Samiya06 » 2 weeks ago

Hello all. I am so thankful to have found this forum. For the past 3 nights I can’t sleep and have needed something like this! And a warning- this may be a long post :sad:
In July of 2017 the left side of my face became tingly and numb, I also lost my taste on the same side of my tongue. After almost 4 full weeks it returned to normal. Then in October of 2017 my right thigh did the same thing (numb, painful, tingle, hurts to touch and sometimes walk), within 2 weeks it was my entire leg and it has been like that ever since. In June of 2018 they did an MRI of my brain and found lesions they states were conclusive to potential “migraine headaches”, which I don’t have. I was sent to a neurologist who stated he did not believe it was anything to worry about and told me to notify him when/if I had new symptoms. In September I started getting horribly painful spasms in my right forearm and in my right buttcheek and has blurred vision in my left eye. It were awful, and I was EXHAUSTED. He ordered an MRI of my c-spine and brain with and w/o contrast. I waited and did it 12/28/18 (I should have done it right away but I was tired of trying to figure out what was wrong with me, so I took a break). This past Wednesday I was told I have a lesion in my spine measuring the length of C3-C4 as well as a new lesion in my brain that is consistent with MS (shape and location). The neurologist wants me to do a lumbar puncture and have my vitamin D levels tested immediately. He stated that he will give a diagnosis even if my lumbar puncture comes back normal due to the lesions and symptoms. I am scared of having the lumbar puncture done. I can’t find information that makes me understand all of these test, what is the purpose of the lumbar puncture if he will be diagnosing me anyway? What does vitamin D have to do with this? And why did he sound so concerned about the lesion in my spine, could that be why my leg is so bad and has been for over a year? I know this is just a forum but I would love any feedback and knowledge you all have to offer!
The conversation was over the phone and my mind was not straight due to the topic and the news I was given so I didn’t think about all the questions I should have been asking. He is going to see me after the bloodwork and lumbar puncture is done. I am scared and nervous but trying to remain optimistic.

Any opinions and thoughts are welcome. And thank you!

User avatar
NHE
Volunteer Moderator
Posts: 5022
Joined: 14 years ago
Been thanked: 1 time
Contact:

Re: Lumbar Puncture - New to MS

Post by NHE » 2 weeks ago

Samiya06 wrote:
2 weeks ago
Hello all. I am so thankful to have found this forum. For the past 3 nights I can’t sleep and have needed something like this! And a warning- this may be a long post :sad:
In July of 2017 the left side of my face became tingly and numb, I also lost my taste on the same side of my tongue. After almost 4 full weeks it returned to normal. Then in October of 2017 my right thigh did the same thing (numb, painful, tingle, hurts to touch and sometimes walk), within 2 weeks it was my entire leg and it has been like that ever since. In June of 2018 they did an MRI of my brain and found lesions they states were conclusive to potential “migraine headaches”, which I don’t have. I was sent to a neurologist who stated he did not believe it was anything to worry about and told me to notify him when/if I had new symptoms. In September I started getting horribly painful spasms in my right forearm and in my right buttcheek and has blurred vision in my left eye. It were awful, and I was EXHAUSTED. He ordered an MRI of my c-spine and brain with and w/o contrast. I waited and did it 12/28/18 (I should have done it right away but I was tired of trying to figure out what was wrong with me, so I took a break). This past Wednesday I was told I have a lesion in my spine measuring the length of C3-C4 as well as a new lesion in my brain that is consistent with MS (shape and location). The neurologist wants me to do a lumbar puncture and have my vitamin D levels tested immediately. He stated that he will give a diagnosis even if my lumbar puncture comes back normal due to the lesions and symptoms. I am scared of having the lumbar puncture done. I can’t find information that makes me understand all of these test, what is the purpose of the lumbar puncture if he will be diagnosing me anyway? What does vitamin D have to do with this? And why did he sound so concerned about the lesion in my spine, could that be why my leg is so bad and has been for over a year? I know this is just a forum but I would love any feedback and knowledge you all have to offer!
The conversation was over the phone and my mind was not straight due to the topic and the news I was given so I didn’t think about all the questions I should have been asking. He is going to see me after the bloodwork and lumbar puncture is done. I am scared and nervous but trying to remain optimistic.

Any opinions and thoughts are welcome. And thank you!

A lumber puncture tests for evidence of inflammatory proteins in the cerebral spinal fluid (CSF) in the central nervous system (CNS). These proteins are reported as oligoclonal bands in the test results. A positive test result is consistent with an MS diagnosis, but not restricted to MS as oligoclonal bands are seen in other inflammatory diseases of the CNS.

Vitamin D3 deficiency is common in MS. It's another piece of the puzzle. If your vitamin D3 level is low, then raising it can reduce the risks of an MS relapse.

Spinal cord lesions tend to produce greater levels of physical disability as the spinal cord has less ability to work around the lesion, i.e., it has lower plasticity.

Do you know if your doctor tested your vitamin B12 level? If so, do you know the test result? A deficiency in vitamin B12 can cause demyelination of the spinal cord. This condition is known as subacute combined degeneration. B12 deficiency can mimic MS in almost every way and the only way to distinguish the two is to rule out B12 deficiency with a series of blood tests. Red blood cell folate, homocysteine and methylmalonic acid are also tested in a B12 assay. Your B12 level should be 500 pg/mL or greater. You need to know the exact level. Do not accept being told that your "result is normal". The laboratory range that's used to define "normal" goes down much too low and people can be told that they're "normal" when they're actually deficient.

Samiya06
Newbie
Posts: 2
Joined: 2 weeks ago

Re: Lumbar Puncture - New to MS

Post by Samiya06 » 2 weeks ago

Great information! Thank you! And my PCP tested B12 but the result I got back was “normal” so I will check in on that. I just want to be sure I am being diligent and checking everything off, I don’t want to miss something. I really do appreciate your knowledge here, it is beyond helpful. My family and friends do not understand and google is an enemy when you are stressed and don’t know quite yet what is happening.
Quick question- I should do the lumbar puncture correct. I feel like the information you just gave me is one step to help make this picture clearer.

ElliotB
Family Elder
Posts: 1692
Joined: 5 years ago
Been thanked: 2 times

Re: Lumbar Puncture - New to MS

Post by ElliotB » 2 weeks ago

Sorry you are not feeling well. Since a lumbar puncture is not necessary at this time to complete your diagnosis, you can choose not to do it and since it is not necessary to do it anyway for your diagnosis why bother. I was given the same option at the time of my diagnosis and chose not to do it and I am glad I did not do it. Many people area correctly diagnosed without doing one.

There is a lot of information on TIMS that can help you, hope you will take the time to do some research here. Welcome! Hope you are feeling better soon.
Last edited by ElliotB 2 weeks ago, edited 1 time in total.

User avatar
jimmylegs
Volunteer Moderator
Posts: 11814
Joined: 13 years ago
Been thanked: 2 times

Re: Lumbar Puncture - New to MS

Post by jimmylegs » 2 weeks ago

hi and welcome sami :)
confirming lumbar puncture is a test for central inflammation as evidenced by higher level of o bands in csf than in serum.
analysis suggests 88% of ms patients test positive for elevated csf ocbs, which of course means that 12% of ms patients do not have them.
https://www.ncbi.nlm.nih.gov/pubmed/23431079
either way, going forward it is wise to proceed with self care measures to prevent inflammation.

if you do proceed with lumbar puncture, inquire about needle type and needle bevel orientation to help prevent post lp headache. only some have this problem. i had it, and it was not fun. my neuro did the lp himself and i never had any idea about the needle or bevel details. maybe it was done just right, but in retrospect i don't think i was adequately nourished to support puncture healing. in the end i had to lie down as much as possible, keeping the csf pressure consistent, to let the puncture seal. the neuro said if it didn't go away on its own i would have to go back for a blood patch. i didn't know anything about that, but i did not like the sound of a second needle to repair damage from the first. luckily lying down for a few days worked.

although not everyone is prone to the headache problem, lying down after an lp procedure is a useful precautionary measure. recommendations for how long are all over the place, but in my case it was bed rest for a weekend that finally did the trick. i've worked hard on nutrition since; if i had an lp today i doubt i would have the same problem again. fwiw, that's my xp :)

related: http://www.thisisms.com/forum/viewtopic ... 023#p34023
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

User avatar
NHE
Volunteer Moderator
Posts: 5022
Joined: 14 years ago
Been thanked: 1 time
Contact:

Re: Lumbar Puncture - New to MS

Post by NHE » 2 weeks ago

jimmylegs wrote:
2 weeks ago
the neuro said if it didn't go away on its own i would have to go back for a blood patch. i didn't know anything about that, but i did not like the sound of a second needle to repair damage from the first. luckily lying down for a few days worked.
Regarding the blood patch, blood was taken out of my arm and injected into my spine. The second needle does not puncture the dura. The procedure was painless and relief from the post LP headache was almost immediate though they had me lie down afterwards for a little while to help make certain the blood had a chance to clot and block the leaking dura.

Zyklon
Family Elder
Posts: 287
Joined: 1 year ago
Location: Turkey

Re: Lumbar Puncture - New to MS

Post by Zyklon » 2 weeks ago

Welcome.

I recommend starting 4000 IU vitamin D3, 400 mg magnesium and 5000 mcg B12 daily. Try to minimize sugar intake.

I was diagnosed without a lumbar puncture. It is not a must for all cases. Maybe discuss it with your doctor?

MS is manageable if you take care of yourself.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

User avatar
jimmylegs
Volunteer Moderator
Posts: 11814
Joined: 13 years ago
Been thanked: 2 times

Re: Lumbar Puncture - New to MS

Post by jimmylegs » 2 weeks ago

any one person may need more or less of any nutrient, depending on current status relative to desired targets. doses, forms, combinations, timing and other health conditions / genetics are all important considerations. recommended daily amounts, safe daily upper limits over the long term (vs short term therapeutic intakes), and cofactors needed for optimal absorption/utilization should all be considered. it's a long and interesting learning curve.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Post Reply