LP/Spinal Tap or New MRI in 6 Months?

[thisiswater]

This is a shorter version of a post I put on the Introductions Board, but with a specific question:

I had optic neuritis in 2009. It resolved and, while I had an MRI that showed a couple of v. small lesions, the neuro said they were more typical of migraine and that was that. My vision was restored. I just put it out of my mind.

During this time I was diagnosed with 2 herniated discs and have cortisone injections at the site once or twice a year with good result.

This past December I was lifting a VERY heavy leather chair and had the worst headache I can imagine. I went to the hospital and had MRIs to rule out aneurysm/masses. Also had CT scans and blood work . WELL, then my pcp noticed new lesions and sent me to a neuro, which is where I am today. I was able to get the 2009 MRI to him and he noticed more lesions in the current MRI. Called me today to said he's thinking MS and wants me to have a lumbar puncture or another MRI in 6 months. He's leaning toward the LP, but asked me "If it's positive are you willing to begin tx for MS?"

I have lots of questions and don't want to overwhelm, so here goes:

- Is a lumbar puncture still *really* necessary I know lots of people don't have them.
- I've been reading and watching YouTube re: **diet and supplements and am curious as to where you all think I should start**
with that. If you could triage re: supplements, that would be just great.
- Should I ask my neuro to do a nutrient work up before the spinal tap? I know Vit D and B vitamins are huge issues.

What would you do? Would you do things differently than you did at the beginning? Many thanks! I so appreciate the feedback.

[tortis]

Hi its nice to meet you, I wish it was for a different reason though.
I would definitely get the spinal tap because it can find many different things beside M.S. and many of them are more treatable. I would hope you do not have M.S. My neighbor had Lyme and went on antibiotics and has been fine ever since.
PEACE
Tortis

[JerryD]

Hi and welcome to the MS board where everyone asks everything MS related .
I think that tortis's response is a good one but I would do every test that I could take and do the LP as a last resort ! I suggest that you ask your doctor to do a CBC and a vitamin D blood test. I would not listen to any statements from the doctor that states ' your levels are ok' ! You must insist on getting the actual levels in ng/Ml. My levels of vitamin D are 62 ng/Ml at my last blood draw. Remember that there are around 400 mimics of MS. Be your own 'advocate' ! Get second and third opinions ! aQDon't accept any advice without being very suspicious ! Good luck

[jreagan70]

Called me today to said he's thinking MS and wants me to have a lumbar puncture or another MRI in 6 months.

In your position I would do neither one. Instead, I would get another opinion from a neurologist who knows more about MS than your current neuro seems to.

The McDonald diagnostic criteria for MS don't require an LP. They do require evidence of dissemination in time and space. If the lesions on your MRI are characteristic of those that occur in MS, you already meet those criteria. New lesions compared to 2009 meet the criterion of dissemination in time, and more lesions meet the criterion of dissemination in space. And you're already had optic neuritis which, along with the brain lesions that were present at the time, already put you at high risk of developing MS.

It's a little more complicated than that, but not much. Your MRI is already different from 2009. There's no reason to wait 6 more months for another MRI.

He's leaning toward the LP, but asked me "If it's positive are you willing to begin tx for MS?"

About 15% of people with MS have negative LPs. Your neuro's question implies that he believes that a negative LP rules out MS, and only a positive LP would be an indication to start a treatment med for MS. Wrong!

Certainly you could go ahead and have the LP. If it's positive, your neuro would have enough information to satisfy himself and start you on an MS med. That could speed up your treatment by a couple of months.

But a negative LP could also delay your treatment by a few months while your neuro waits to make a decision. And you would have put yourself through what could be an unpleasant experience for no benefit.

In your position I would hold off on the LP and get a second opinion (which could take three or four months anyway). You can contact your local chapter of the National Multiple Sclerosis Society for a list of names of neurologists in your area who are purported to have experience and skill with MS. It doesn't necessarily mean that they do, and the list is NOT recommendations. But it's a place to start.

You can also go to the website of the Consortium of Multiple Sclerosis Centers and search (http://www.mscare.org/search/custom.asp?id=881) for an MS center that might be near you that, at least in some ways, adheres to the standards of the Consortium.

Both are probably preferable to just going to the neuro that came up on your insurance list or your GP referred you to just because he's somehow in the network.

An LP can provide good, supportive information in making a diagnosis of MS, but it isn't necessary if your diagnosis can be made without it. Evoked potentials testing can also supply supportive information, and those tests aren't invasive. You've already had optic neuritis, so an abnormal evoked visual potential wouldn't be unexpected. It might be helpful, though, to have objective testing in your medical record.

As for nutrient workups, the fact that your neuro hasn't already ordered the tests is another piece of evidence that points to him being a bit of a dud. Your PCP can order all the tests you need. Somewhere along the line you should also have a rheumatology panel done as proof that other inflammatory conditions have been ruled out. (The MS diagnostic criteria require that all other possible causes for signs and symptoms be ruled out.)

So you can start looking for an MS specialist and get blood tests done by your PCP and not have to wait for your current neuro to make up his mind -- based on some questionable actions -- about whether you have MS.

[thisiswater]

Thank you!

In your position I would do neither one. Instead, I would get another opinion from a neurologist who knows more about MS than your current neuro seems to.

The McDonald diagnostic criteria for MS don't require an LP. They do require evidence of dissemination in time and space. If the lesions on your MRI are characteristic of those that occur in MS, you already meet those criteria. New lesions compared to 2009 meet the criterion of dissemination in time, and more lesions meet the criterion of dissemination in space. And you're already had optic neuritis which, along with the brain lesions that were present at the time, already put you at high risk of developing MS.

It's a little more complicated than that, but not much. Your MRI is already different from 2009. There's no reason to wait 6 more months for another MRI.



About 15% of people with MS have negative LPs. Your neuro's question implies that he believes that a negative LP rules out MS, and only a positive LP would be an indication to start a treatment med for MS. Wrong!

Certainly you could go ahead and have the LP. If it's positive, your neuro would have enough information to satisfy himself and start you on an MS med. That could speed up your treatment by a couple of months.

But a negative LP could also delay your treatment by a few months while your neuro waits to make a decision. And you would have put yourself through what could be an unpleasant experience for no benefit.

In your position I would hold off on the LP and get a second opinion (which could take three or four months anyway). You can contact your local chapter of the National Multiple Sclerosis Society for a list of names of neurologists in your area who are purported to have experience and skill with MS. It doesn't necessarily mean that they do, and the list is NOT recommendations. But it's a place to start.

You can also go to the website of the Consortium of Multiple Sclerosis Centers and search (http://www.mscare.org/search/custom.asp?id=881) for an MS center that might be near you that, at least in some ways, adheres to the standards of the Consortium.

Both are probably preferable to just going to the neuro that came up on your insurance list or your GP referred you to just because he's somehow in the network.

An LP can provide good, supportive information in making a diagnosis of MS, but it isn't necessary if your diagnosis can be made without it. Evoked potentials testing can also supply supportive information, and those tests aren't invasive. You've already had optic neuritis, so an abnormal evoked visual potential wouldn't be unexpected. It might be helpful, though, to have objective testing in your medical record.

As for nutrient workups, the fact that your neuro hasn't already ordered the tests is another piece of evidence that points to him being a bit of a dud. Your PCP can order all the tests you need. Somewhere along the line you should also have a rheumatology panel done as proof that other inflammatory conditions have been ruled out. (The MS diagnostic criteria require that all other possible causes for signs and symptoms be ruled out.)

So you can start looking for an MS specialist and get blood tests done by your PCP and not have to wait for your current neuro to make up his mind -- based on some questionable actions -- about whether you have MS.

Thanks of all of this. Lots of wisdom, reason, and food for thought. I live near Boston where cutting edge MS Clinics abound at the major teaching hospitals. I think I'm going to go to Mass General ...