LoveActually wrote:Here's the condensed version of my story -
Diagnosed with RRMS Oct 2009....
..My MRI, according to them, is the same as my previous one a year earlier. They asked me, "why do you think you have MS?"
Did you have an MRI done around the time of your diagnosis in October? Were the ER neuros were saying your latest MRI does not show any changes, or it does not show any lesions at all?
LoveActually wrote:I do not have a good sense of the range of differential diagnosis for MS. I just thought there was RRMS, PPMS, SPMS. And I figured that RRMS was the least severe on the scale.
Differential diagnosis refers to all the other conditions that might cause symptoms similar to MS. MS can be a tough disease to diagnose, since their isn't one test to say, "yeah it's MS." There's no simple blood test or biopsy. The MRI has become the standard tool for helping determine if it's MS, but the white spots seen on MRI films can mean many things.
So, the doctor has to make a diagnosis based on clues from a bunch of sources, like symptoms, neuro exam, MRI, and sometimes LP. Along with this they should do tests to rule out other things. For example, doing a syphilis blood test is pretty standard procedure, since a neuro-syphilis infection can act a lot like MS. The EMG and nerve conduction tests also try to rule out other causes (they look to see if there is muscle and/or peripheral nerve damage).
Unfortunately, the procedure isn't that standardized - one neuro might see spots on a MRI and immediately say it's MS. Others might be more circumspect, and want to wait for a second attack, for example.
The lumbar puncture can help rule in MS, but it can't rule it out. A negative result doesn't necessarily mean no MS. But if you want it for peace of mind, then it might be worth doing. If you do decide to go through with the LP, people here can give you plenty of advice on how to avoid some of the problems with the LP, like the spinal headache.
I think the best thing is try to find a neuro you trust and can work with. As you're finding out, it's tough trying to rule these things out on your own.