Cherie,

I have to respectfully disagree with the quoted point.

As you know "TIME" can often be our worst enemy when seeking a dx. While patients may be fortunate enough that time does not lead to progression of the disease and possible disability, that is not the case for others. Early intervention with one of the ABCs is the protocol even for "probable" MS and the prognosis for slowing and even possibly halting the disease process is good with early intervention.

I a crusader for the second, third, and even fourth opinion for a potential MS patient. I am also a tremendous advocate for seeking out an MS specialist as opposed to a neurologist.

I had "unusual" symptoms from my teen years forward which came and went. Other than my migraines, none ever had a concrete diagnosis, and diagnostic findings came up empty, with the exception of some minor abnormalities in an EMG when I was a teenager. It was not until the eve of my 40th birthday that it became apparent that I was suffering from something much more than "unexplained symptoms." I landed in the hospital with a loss of sensation and control from the waist down. That was the first mention of MS.

Unfortunately, my lesions were not "typical" for MS, and my LP did not show O-bands--just an elevated protein level. Although the symptoms that caused me to be hospitalized subsided, I spent the next five years in total frustration, being bounced from endocrinologists, to infectious disease specialists, to pulmonary specialists in an effort by a truly concerned internist. The neuro who evaluted me three times nearly laughed me out of his office. My internist was convinced that I had MS, but could get no external validation of his opinion. That was when I gave up on doctors and decided to just gut it out.

Gutting it out soon proved to be futile, as I found myself so exhausted on my drive home from work that I routinely considered stopping and asking my husband to pick me up. The symptoms did not subside. My performance at work was slipping and I was absolutely useless to my family. That's when I found a message board where, through the support of many people who are now members here, I obtained the guidance and support to start exploring the possible meaning of my symptoms and test results.

At that point, the first neuro I went to refused to dx MS even after a bout of optic neuritis, neuropsych tests suggestive of disease activity consistent with MS, and an LP that again showed no O-bands, but an elevated protein level and an abnormal iGG index. After bonding with one of the board members, she and I met twice. The first to discuss my situation and the second for her to look at my records (my situation as I had related it sounded very similar to hers when she was dx'ed). It was at that second meeting that she convinced me to see her MS neuro. She actually went with me and, after a more thorough neuro exam than I had ever been given, the doctor's exact words were, "There's no doubt that you have MS."

By that time I was disabled by SSDI standards. In the process of preparing for the definitive neuro's visit, I gathered all of my medical records and learned that, in addition to the test results I've already mentioned, the MRIs done over those five years showed additional lesion activity, but that it was written off as "not typical" of MS by the radiologists reading it. Fortunately, the specialist viewed each one of the MRI films and interpreted them himself.

He immediately put me on Avonex, which failed to stop the disease activity. Nine months later, I had more lesions, and was suffering from more frequent and more intense relapses. Fortunately, my disease activity stopped coincident to being put on Rebif and my lesion load has been stable for the past two years. In that process, however, I went from RRMS to SPMS.

I have gone on way too long to make a simple point. When MS is the potential dx, time is the enemy. Patients have to find the resources to help them understand the science so that they can become their own advocates. Because the dx of MS is not a precise science, you have to be armed with facts, information and support so that you can ask the right questions and not silently accept a physician's pronouncements.

Diagnosing MS is not as simple as diagnosing strep throat, the flu or a common cold and we have to be aware of that fact so that we can tailor our relationship with our examining physicians accordingly. Otherwise, while time may make the dx more obvious, time can also rob the patient of the opportunity for ABC treatment that can slow or even halt the progression of the disease.