Multiple Sclerosis (MS) Support Group
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I would like YOUR opinion here please if you feel like it. 5 years ago I experienced a period of 4-6 weeks of vertigo. Thought nothing of going to a doctor - it will pass. Went to ENT for hearing problems, they sent me for MRI. Found 4 or so lesions and referred me to a neuro. It was explained that a lot of people get white matter spots on their brains for no reason. Other "symptoms" started creeping in noticed by me...severe fatigue, balance problems, coordination problems, bladder running constantly, vertigo continued, forgetting how to do what I do every day, driving in wrong directions and getting lost, tremors. Weird thing, I would awake one morning and feel all of these things at once, symptoms last 4-6 weeks. I would awake and they all would be gone. Happens about 3/4 times year. Consistently for several years. My internist says it sounds like MS and the neuro's don't do anything, so I'm sent to Univ. of MD MS Center to see new doc. He does spinal tap, bands show. He sends me to ENT for an array of tests which show my problem is not in my ears. I see the UM neuro again next week. I think I should demand evoke potential tests as this has been going on for about 6 years. I want an answer. My latest MRI for this exam next week does not show any more lesions. WHAT DO YOU THINK? UM neuro said I don't meet the McDonald criteria for MS I think because I have no new lesions?
WHAT DO YOU THINK?
WHAT DO YOU THINK?
Changing lesion size does not indicate MS specifically, but it is a strong indication of a demylenating disease what ever on it is.. And there are alot!
As far as asking for the test, leaving the appointment with unresolved questions sounds very bad. Even if it is a future appointment to monitor.If he denies the test when asked, ask him to explain why it is not not helpful at this time.
I didn't go through a diagnostic nightmare. I had lesion and they diagnosed me right away. So I don't have experience in this situation. But I did experience diagnosis for MS.
I know when I was diagnosed,my doc was only interested in symptoms I had seen a doctor for in the past whether a cause was determined or not.
He discounted anything I said that might have been MS. He said "it is impossible to diagnose the past in the present. It might have been MS or it might not have been."
He was only interested in episodes that a doc had confirmed it wasn't anything else, even if the doc didn't find it to be MS and couldn't find a reason for it.. The doc had excluded anything obvious. Those he was willing to consider as past MS episodes.
It ended up that I had a lot of lesions so my MRI and present symptoms diagnosed me, he didn't need "possible" past episodes. He won't even listen to anything I had not seen a doc for.
I think that is called "clinically confirmed episodes". Not just anecdotal evidence.
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http://en.wikipedia.org/wiki/Anecdotal_evidence
"The expression anecdotal evidence has two quite distinct meanings.
(1) Evidence in the form of an anecdote or hearsay is called anecdotal if there is doubt about its veracity: the evidence itself is considered untrustworthy or untrue.
(2) Evidence, which may itself be true and verifiable, used to deduce a conclusion which does not follow from it, usually by generalizing from an insufficient amount of evidence. For example "my grandfather smoked like a chimney and died healthy in a car crash at the age of 99" does not disprove the proposition that "smoking markedly increases the probability of cancer and heart disease at a relatively early age". In this case, the evidence may itself be true, but does not warrant the conclusion.
In both cases the conclusion is unreliable; it might happen not to be untrue, but it doesn't follow from the "evidence"."
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MS sometimes takes a while to diagnose, it needs to ferment for a while before it becomes diagnosable.
If you don't get the evoked potential test & even if you do, instruction for how to proceed when the symptoms do occur, to make diagnosis in the future - for what ever it is - most likely.
I would at least expect from the appointment. Hopefully he will do this before you ask.
if your visit does not satisfy you, and you are concerned for your well-being, then i would seek a second opinion either with another ms specialist, or with your primary doc.
if you DO have ms, then you have it untill there is a cure ~ a few months or tests won't change that (there's no rush).
no matter what your diagnosis, you have the right to ask questions, change doctors, and receive treatment for symptoms ~ no matter what the disease.
it's hard not to worry, but be careful not to add stress to a body that is already working overtime to balance itself. rest, be patient, drink your water! ...and know that you will continue to seek professional input until you are satisfied and feel like you've done the best you can. ;)
Neener