Not sure what to think

[Cdod81]

I had and MRI ordered by my primary doc due to migraines. It came back with scary results. 10-12 lesions in the white matter with 3 that were periventricular in location. This led me to a neurologist who ordered an EEG and a lp. He said the lesions led him to believe I had MS but I didn't have many symptoms. Some RLS and tingling in my legs and dizziness but that was about it. He put me on low dose steroids and magnesium and B2 right away. The lp just came back neg. 0 O bands. So does that mean I do not have MS? I have a meeting with doc on Friday but I have a problem trusting him now. He did the lp and really messed it up. I was in hospital for a week after he did it and told me the only reason it was so problematic is that I must have had scoliosis as a child. I did not. The doctor that did a blood patch to fix the problem had no problems. I will probably change doctors I just wonder if I should continue on the MS path or leave it. This doctor said he would not continue treatment. Thanks!

[jreagan70]

I had and MRI ordered by my primary doc due to migraines. It came back with scary results. 10-12 lesions in the white matter with 3 that were periventricular in location. This led me to a neurologist who ordered an EEG and a lp. He said the lesions led him to believe I had MS but I didn't have many symptoms. Some RLS and tingling in my legs and dizziness but that was about it. He put me on low dose steroids and magnesium and B2 right away. The lp just came back neg. 0 O bands. So does that mean I do not have MS? I have a meeting with doc on Friday but I have a problem trusting him now. He did the lp and really messed it up. I was in hospital for a week after he did it and told me the only reason it was so problematic is that I must have had scoliosis as a child. I did not. The doctor that did a blood patch to fix the problem had no problems. I will probably change doctors I just wonder if I should continue on the MS path or leave it. This doctor said he would not continue treatment. Thanks!

If this doctor doesn't intend to continue any treatment, why would you want to see him again? In your situation, I wouldn't.

As far as O-bands go, 5-10% of people diagnosed with MS have no O-bands (I didn't). So a negative LP doesn't guarantee that you don't have MS.

On the other hand, the mere presence of brain lesions on MRI doesn't mean that you do have MS.

MS lesions have a particular appearance. You didn't say in your post what the impression of the radiologist was. If your lesions are characteristic of MS, the radiology report would say so. If your lesions have a nonspecific appearance, the radiology report would say that. So you really have to read the report to know what your lesions look like.

There is no single test that's diagnostic of MS. Diagnosis is based on several pieces of information, including symptoms -- not just nonspecific symptoms -- that are characteristic of two inflammatory, demyelinating events.

It doesn't sound like you have any kind of a doctor-patient relationship with your neurologist, and it doesn't sound like anything is going to come of another appointment with him -- although you should certainly go if you think it would be worthwhile for you.

With numerous brain lesions of a currently unknown type, you would benefit from an evaluation by a neurologist who is specifically experienced with MS. You can do that by:

1. Getting an appointment with the neurology department of a teaching hospital/clinic affiliated with a university medical center (many have specific MS departments)
2. Going to the website of the Consortium of Multiple Sclerosis Centers and seeing if they have an affiliated clinic in your area (www.mscare.org > Directories > MS Centers then enter your location)
3. Asking your local chapter of the National Multiple Sclerosis Society for their list of local neurologists who have experience with MS (these are not recommendations, but your odds are better than if you just go to the general neurologist who's on your insurance list)

In the meantime, you can read up on the criteria by which MS is diagnosed (called the MacDonald criteria): http://onlinelibrary.wiley.com/doi/1...ana.22366/full

[Cdod81]

If this doctor doesn't intend to continue any treatment, why would you want to see him again? In your situation, I wouldn't.

As far as O-bands go, 5-10% of people diagnosed with MS have no O-bands (I didn't). So a negative LP doesn't guarantee that you don't have MS.

On the other hand, the mere presence of brain lesions on MRI doesn't mean that you do have MS.

MS lesions have a particular appearance. You didn't say in your post what the impression of the radiologist was. If your lesions are characteristic of MS, the radiology report would say so. If your lesions have a nonspecific appearance, the radiology report would say that. So you really have to read the report to know what your lesions look like.

There is no single test that's diagnostic of MS. Diagnosis is based on several pieces of information, including symptoms -- not just nonspecific symptoms -- that are characteristic of two inflammatory, demyelinating events.

It doesn't sound like you have any kind of a doctor-patient relationship with your neurologist, and it doesn't sound like anything is going to come of another appointment with him -- although you should certainly go if you think it would be worthwhile for you.

With numerous brain lesions of a currently unknown type, you would benefit from an evaluation by a neurologist who is specifically experienced with MS. You can do that by:

1. Getting an appointment with the neurology department of a teaching hospital/clinic affiliated with a university medical center (many have specific MS departments)
2. Going to the website of the Consortium of Multiple Sclerosis Centers and seeing if they have an affiliated clinic in your area (www.mscare.org > Directories > MS Centers then enter your location)
3. Asking your local chapter of the National Multiple Sclerosis Society for their list of local neurologists who have experience with MS (these are not recommendations, but your odds are better than if you just go to the general neurologist who's on your insurance list)

In the meantime, you can read up on the criteria by which MS is diagnosed (called the MacDonald criteria): http://onlinelibrary.wiley.com/doi/1...ana.22366/full

Report said that 3 of the lesions were periventricular in location so demyelinating desease such as MS should be considered and workup clinically. He also said to workup casculitis and Lyme's disease which they did and they both came back negative. The only other thing is that my migraines could be causing the lesions but all my neuro said was that the lesions did not look like they were caused by migraines. Im not sure what that means, but he keeps ruling things out but not giving me any answers. Im just frustrated. At the lp he mentioned that the mri did not have any lesions light up so I know that means that they did not have a blood supply. Is that something critical to MS lesions? They did not do an MRI of my spinal chord so I dont know about that I just dont know what to think anymore. Im making myself a little crazy.

[Cdod81]

RIS it is

So my doctor came back with RIS today, which is good news. Its means the lesions mean something to him but that I dont have MS! No meds or course of action yet. New mri in 6 months to see if anything has changed.