Tag Archives: Diagnosis

My new MS doctor – and finally, a diagnosis

As I mentioned in my last post, Doc Fundamental suggested that we get a second opinion from Famous Doc B.  The four months that I waited for an appointment went relatively fast.  I was very busy with work and my family.  I was also spending a lot of time reading everything that I could get my hands on related to multiple sclerosis and other similar diseases.  But as my appointment approached I started getting more anxious to do something about this probable MS.  After all, it had been a year since I had first seen the doctor about my leg.

I had read a lot about Famous Doc B prior to my first appointment.  My wife and I agreed that if we liked her, we would see if she would take me on as a patient instead of just providing a second opinion.

Famous Doc B was wonderful.  Going forward, I will refer to her just as my ms doc.

My ms doc started with the usual discussion of my history and the typical physical tests.  Then we went into another room to analyze my MRI images on a computer screen.  Doc Fundamental had relied on the written reports by the radiologists of my MRIs.  My new ms doc read those, but analyzed the images herself.  She explained to me and my wife  what we were looking at and the significance of each of the lesions, taking into account the differences between viewing them from the MRIs done with contrast and done without, and what that means.

Doc Fundamental is a good general neurologist that I wouldn’t hesitate to refer someone to.  However, my new ms doc had dedicated her whole career to studying the progression of multiple sclerosis.  Her answers to our questions and her analysis gave me and my wife enormous confidence in her.

And then came the diagnosis that I knew in the back of my mind had been coming for a while.  My ms doc said that I have multiple sclerosis.

We discussed the options for treatment and her suggestions (a topic for the next post).  My wife asked her if she would be willing to take me on as a patient and she said yes.  I was thrilled.  My wife cried.  Not because of the diagnosis; we knew that was coming.  But because I was going to have such a great doctor by my side for the upcoming battle.

As a footnote, it was a lucky call choosing my ms doc over Famous Doc A for the second opinion.  Famous Doc A will only do second opinions now and is not taking on any new patients at all.

And now the marathon journey begins….

Getting a second opinion

Things seemed to be stalling with Doc Fundamental.  I had been seeing him for almost six months and he still hadn’t made a determination as to what the cause of my tingling leg was, much less start a treatment plan.  Even my primary care physician expressed a little concern.  “I know that you don’t have many symptoms today, but we want to keep it that way”.

Doc F was just being conservative and cautious, not wanting to misdiagnose me as having multiple sclerosis if indeed I didn’t.  It was a murky mixed picture.  My MRI reports were bad and said that it looked like MS.  Yet, I had virtually no symptoms.  My blood tests came back mixed and confusing.  Doc F admitted “I don’t know what to make of them”.  My spinal tap showed evidence of the antibodies that they test for to show evidence of MS.  But even then, the readings were not that far out of normal.

Thankfully, despite his many decades of experience (or maybe because of them), Doc Fundamental did not have a big ego.  He admitted that he was not confident in the assessment and suggested that I get a second opinion.

I live in a major metropolitan area.  That has it’s pros and cons.  One benefit is that there is an abundance of excellent healthcare options.  In my city, there are two very well known MS neurologists.  Both have been published countless times and received many awards and recognition for their research in multiple sclerosis.  Doc F suggested going right to the creme of the crop and seek a second opinion from one of these two; Famous Doc A or Famous Doc B.  He said that it was a coin toss.  He would would rank them #1 and #1.  As I was reaching into my pocket for a coin to determine it, he said that maybe we should try Famous Doc B first, because A has been on the lecture circuit a lot recently and I might be able to get in to see B sooner.

Doc F sent off my file and a writeup requesting that Famous Doc B see me for second opinion appointment.  It took a week and a half for them to decide, but they finally got back to me that she would see me.

I was very excited!  Finally, moving forward again.  Well, sort of.  The soonest that I could get an appointment was going to be four months away.  I can only imagine how long it would have taken to get in to see Famous Doc A.

Lupus and Lyme disease. Is that better than MS?

There are numerous diseases that can mimic multiple sclerosis.  An important aspect of forming a diagnosis is to first make sure of what you are not dealing with.

My blood test results came back showing positive readings for both lupus and lyme disease.  Talk about mixed feelings.  I did live in the northeast during the era of lyme disease so I could have been exposed.  In fact, there were moments when I was hoping that the lesions were decades old scars from exposure to lyme.  But lupus?

I looked up lupus online.  Like MS, it doesn’t have to mean the end of the world.  However, while there were countless articles online about new drugs and developments in the fight against MS, the front against lupus seemed a little quieter.  I was in the very strange place of having to hope for one horrible disease over another.

Dr Fundamental wasn’t buying it.  He examined me again and said that he would be shocked if I had lupus.  He was also skeptical of the significance of the lyme disease result.  He sent the report off to his friend, an infectious disease specialist.  That doctor concurred that the lyme disease result was suspicious and extremely unlikely to be the cause of my lesions.

For the lupus result, Doc F wanted a recount.  He sent me to have blood drawn again but this time he had it sent to a different laboratory who’s specialty was in rheumatology tests. The result came back negative.  Doc F was right and it seemed that I did not have lupus after all.  Whether that was good or bad was really hard to say.  At this point I was anxious to figure out which devil it was that we were dealing with.

It was back to the list to see what else we could check off.

There is no test for Multiple Sclerosis

There is no test for MS.  It would be great if you could give a little blood or pee in a cup and have the result come back from a lab as positive or negative.  Unfortunately, it is not that simple.

The standard definition is to have evidence of lesions at two or more locations, at two or more points of time.  I have found that the calling of the diagnosis can vary a bit from doctor to doctor.  Some are more conservative with making the diagnosis than others.  Some are also more experienced with MS and may be more skilled at reading an MRI (especially one done with contrast).

With Dr Fundamental being “very fundamental“, I expected him to be on the conservative end of the spectrum.  At the end of my appointment he explained our process to follow while we waited to see what happens.  There are numerous diseases that can mimic MS that we needed to rule out.  Luckily,  many of these have a test for them.  With each result that we would get back, either the case for or against it being MS would be strengthened.  Eventually we might have a preponderance of evidence supporting a diagnosis one way or the other.  That is, if the tests hadn’t identified any other cause.

Next step:  Donate a little spinal fluid and more blood.