Tests say No, but Doc still thinks MS
I have 10 lesions in my brain on the MRI. All the labs and spinal taps are normal, yet my neuro still feels MS is the only answer. I am suppose to wait for new symptoms and go back for another MRI in May. I should feel comforted by the "normal" results but I don't. So I'll continue to take the 1200mg of gabapentin a day and wait. I guess.?. I still have no answers to why I'm having all these issues and no insurance to do any further hunting.
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forgot to mention
I have had about 20 different blood tests, testing from Lymes to a sed rate. The neuro has ruled out infections, cancers, Lyme disease and anything else blood can tell. The Lumbar Puncture was normal on all levels and no bands were present. I have quite a bit of nerve pain, pins and needles and prickly feelings controlled by the gabapentin. I had a Parkinson like tremor severe enough to effect my ability to walk, after 2 mths it eased up and went away for the most part. I still have a faint limp and a slight head and hand tremor. I have some cognitive issues but nothing too bad. Fumble words more than I use to. I have double vision that comes and goes on a daily basis and occasionally the left field of vision starts jerking. My neuro is surprised I can see at all in my left field due to the massive lesion in my R occipital lobe. -
I wouldn't do a B-6 as a separate supplement. I would take a B complex or 2 daily. Just be wary of the various values. I take 2000mcg's of B-12 daily and 5000iu's of vitamin D daily as well. You can get your levels checked through blood test labs and I would get those done. The blood tests for vitamin levels are not a priority for 'regular' MD's. I prod my doctors to do them, and that is how I know my vitamin D level just reached 50 ng/mL. Good luckComment
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I hear you have had lots of tests. Do you have vitamin D and B-12 levels ? If the doctor doesn't have an answer or dx for you, maybe you need to speak to a neurologist or other specialist. If you are in Cleveland, why not try the Cleveland Clinic ?Comment
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This was a neuro I have been seeing. My Vit D level was 50 and my B12 was 563.Comment
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I am in Arkansas not Cleveland.Comment
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Hi amy:
Your case is one that could benefit from a second opinion, even without more testing. (More testing might be helpful, though.)
Two things are necessary for a diagnosis of MS: 1) the presentation must meet the McDonald diagnostic criteria (http://onlinelibrary.wiley.com/doi/1.../ana.22366/pdf) and 2) all other possible causes for the presentation must be ruled out.
It sounds like other causes have been mostly ruled out. But those tests don't rule out MS, because there is no single test that is diagnostic for MS, and no single test that rules it out.
What you haven't told us is how your presentation compares to the McDonald criteria. The McDonald criteria rely heavily on MRI evidence. Often people have trouble meeting the criteria because they have no lesions present on MRI. But that apparently isn't an issue for you.
What you need to know is how your brain lesions compare to those that are typical of MS. Although it's possible, it isn't typical for MS lesions to be "massive," which is how you described one of your lesions. MS lesions usually have a typical appearance and occur in typical places. Did your neurologist say why the appearance of your lesions isn't typical enough of MS to prompt a diagnosis? How do your lesions compare to the McDonald criteria? Further, what does the radiology report say about your lesions?
How many "attacks" consistent with MS have you had? The diagnosis of MS requires two. If all other criteria are met, having only one attack falls under the category of clinically isolated syndrome (CIS). CIS is sufficient for starting someone on one of the first-line injectible medications for MS.
If your neuro is waiting several more months for another MRI to prove dissemination in time in order to diagnose MS, it's possible for you to start on an MS treatment -- if you want to -- with a diagnosis of CIS. How does your presentation compare to the criteria for CIS? What does your neurologist say about the possibility of CIS? How does he think that you have MS but don't meet the criteria for CIS?
A negative lumbar puncture does not rule out MS. Five to 10 percent of people with MS have negative LPs.
It's too bad you don't have insurance to cover more testing, because evoked potentials -- particularly a visual evoked potential -- could add more information.
So what you haven't told us is why you don't meet the McDonald diagnostic criteria for MS and what specifically is preventing your neuro from making the diagnosis. A second opinion, even without more testing, might deliver different answers.Comment
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The lesion on the occitpital lobe is atypical of a MS lesion, the rest however fit it. I'm not keen on starting meds without a DX. I will call and ask about CIS. I have yet to show space and time because this was my first MRI that showed lesions. I had an MRI 10 yrs for my headaches and it was clear. I went for PT for my neck and the headaches went away. A second opinion would require me to have $300 for the first visit and at the moment I am unemployed.Comment
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I have only had the one attack, last May.Comment
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I guess I've showed space but not time. I have lesions in both hemispheres and centrum semiovale periventricular deep white matter and juxtacortical white matter.Comment
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Hi Amy....I, like you, have no insurance but just wondering if you have checked into any charity programs with the hospital? And, if you qualify you would be able to get further testing and if there's a neuro or any other dr hired through that hospital, you would be able to go to them also.Originally posted by clevelandamy View PostComment
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The neuro I'm seeing is the only MS specialist in my area. I would have to drive 2 1/2 hrs to another one. I will wait for the next MRI in 6 mths. It should give me a good idea on what is going on.Comment
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