Beginner’s Guide to MS: Consulting with a Neurologist

Lisa Emrich Living With It Musician, Patient Advocate, and Founder - Carnival of MS Bloggers Lisa Emrich is a professional musician. She happens to live with... Send Message Subscribe: Lisa Emrich

Tuesday, February 10, 2009
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In the previous post, My fingers are numb, should I call the doctor?, I began walking you through the first steps toward a diagnosis. That diagnosis might turn out to be multiple sclerosis, but it also could be something else. What amazed me in reading the comments for that post were t...

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It is quite the journey...
Merely Me
Wednesday, February 11, 2009 at 02:40 PM

Let's see...my diagnosis took six months from the time I saw my general practitioner until I was seen by the neurologist who officially wrote down that I had MS. However...the time between my first symptom of MS (optic neuritis) and my diagnosis was over ten years!

Oh and I still have my first huge scans as a momento of my diagnosis. I keep mine in my closet.

Great article with lots of information!

re: It is quite the journey...
Lisa Emrich
Wednesday, February 11, 2009 at 06:33 PM

I WISH that I had the films from my VERY FIRST set of MRIs which occurred in the spring of 1993. The reason for the MRIs were to investigate some unexplained visual disturbances, looking for a possible brain tumor.

Sometime after that was when I first noticed that colors looked different between my eyes. Can we all say 'optic neuritis'? That also correlated to the onset of some serious depression which my infusion nurse believes was my first MS symptom.

So, if I count 1993, it was 12.5 years to diagnosis and I've had MS for 16 years already. The year that I was dx was the very first time that my cervical spine had been scanned which got me diagnosed.

It's not always easy, is it?

Different Paths to Diagnosis
Mandy Crest
Wednesday, February 11, 2009 at 03:51 PM

I had a six-month lapse from first MAJOR symptoms to diagnosis. Little was learned from basic neurologic exam, spinal tap, or other tests. It wasn't until a good MRI that the whole picture became clear and I got that diagnosis.

Just as our MS symptoms are widely variable, our paths to diagnosis are as well.

Best advice I can offer to those who suspect MS -- keep that journal of symptoms, a record of all tests, don't be afraid to get a second opinion, and don't give up!

re: Different Paths to Diagnosis
Lisa Emrich
Wednesday, February 11, 2009 at 06:40 PM

If you check the additional information I provide above, you can see that it really took much longer for my diagnosis. I never kept a record of symptoms over the years and do not have the films or report from my very first set of MRIs. It is only by looking back that the picture becomes more clear.

I agree that folks who suspect MS should never be afraid to get a second opinion, and perhaps seek one out from a neurologist who specializes in MS. A record of all the tests (including past bloodwork), why the test was conducted, what were the symptoms at the time, what was the outcome or diagnosis (if any).

I do enjoy hearing everybody's stories which does illustrate how different our experiences are while they are all very similar. The key to my diagnosis would be the eventual MRI scan of my neck.

quick diagnosis
Julie
Thursday, February 12, 2009 at 10:45 AM

It's so interesting reading your post, Lisa, and everyone's comments on this. From my first major attack to definite diagnosis took about 2 weeks. That neurologist said that the number of lesions indicated MS had been working in my body for about 10 years prior. I never suspected MS before the words came out of his mouth.

Of course, in retrospect, I can point to some episodes that were MS. Over the previous 4 years: I'd had optic neuritis -- saw my optometrist who said there was nothing wrong, so I chalked that up to stress. Suffered vertigo and somehow ended up seeing a cardiologist for a possible heart issue -- again, nothing wrong there, so attributed it to stress. Extreme fatigue, which I just chalked up to overdoing things (and felt embarrassed at not being physically stronger). Finally, some unexplained pain that sort of felt like a bladder infection (test said it wasn't) that I just chalked up to "one of those things."

Finally, my legs went numb and there was no way that could be brushed off as nothing. The MRI led to an immediate referral to a neurologist, rapid series of additional tests, and a diagnosis.

There was really no way that any of my earlier symptoms would have led me or any of the drs I saw to suspect MS. I certainly didn't put any of them together -- my neurologist did when he questioned me after seeing my MRI.

re: quick diagnosis
Lisa Emrich
Thursday, February 12, 2009 at 01:26 PM

Hi Julie,

The very first time I ever heard the words "multiple sclerosis" in connection with me was the day that I was going blind in the right eye. I had seen my optometrist the day before because things just weren't right somehow. The next morning, my vision was DEFINITELY messed up and I was scared.

Saw my eye doctor first thing that morning and he referred me to a retinal specialist who took me immediately for an appointment. That doctor said that it wasn't my retina and he referred me to a neuro-opthamologist who worked me in that afternoon. He was the first one to mention that MS was a possibility, but so was a brain tumor, or maybe Lyme disease, etc.

Bloodwork came back fine. MRI showed inflammation of the optic nerve (ie. optic neuritis). But the radiologist report stated "no evidence of any demyelinating disease" so it was determined to be an isolated case of optic neuritis. So for the next five years anytime something just not quite right happened, I would repeat the mantra, "you know that I had optic neuritis in 2000, right?" But it wasn't until the fingers/hand/arm/back went numb that I underwent another MRI.

Are you glad that you were diagnosed so quickly once they started looking for it? Or, do you wish that you had been diagnosed sooner?