Sometimes the MiSery is Not MS

Over the past year or so, I’ve joined several MS Facebook groups, mostly out of curiosity regarding what MS “looks like” in other folks, in hopes of getting some needed perspective.  In some cases, the collective advice and wisdom have been somewhat helpful. On the flip-side, I have also noticed an alarming tendency to attribute every ache and problem under the Sun to MS.  At one point, I was even advised by a member of one of these groups to “just blame everything on MS because it’s easier that way”.   Maybe, but the scientist in me ain’t buying it.  Even more importantly, sweeping everything under the “MS rug” has the potential for doing considerable harm. Take my hand, for instance…

As you may recall, I’ve been having some serious pain and weakness in my hand and arm.  The pain reached peak intensity during a recent trip to Washington, D.C., which was a stressful trip in its own right (I was at my agency’s main Headquarters to present some solutions to the budget problem that my Mission is currently having, in hopes of keeping it alive at a reduced cost.  More on that situation, in the next post).  One afternoon, I decided “enough”.  The pain was now down in my right foot (the same, deep throbbing pain that I was feeling in my arm), and I had a few numb toes.  The feeling was strange, a swollen feeling accompanied with this surface numbness that felt like I was wearing knee-high socks and gloves, with some more significant numbness on parts of my thumb thrown in for good measure. The pain — a deep down-in-the-bone ache that shifted from between my wrist and elbow at night to the back of my hand during the day — was almost unbearable. I called my neuro’s office with a simple question:  I was flying back home in the morning, should I make an appointment to see her (or, if she felt more appropriate, my primary care physician) after I landed?

I finally saw Dr. K. last week, after my foot had fully recovered and after my arm had gone through a couple of cycles of “gah!  the agony!” to “pain? what pain?”.  I also had an MRI taken before my doc visit (a prerequisite to being able to see her).  Below is a summary of the visit:

The Good News:

  • The spine MRI showed that edema in one of my disks appearing in the 2012 MRI was now gone, and my spine continues to remain lesion-free.
  • No new brain lesions, and none of the existing lesions enhanced with contrast (not a surprise, as my MRIs have remained unchanged since the first I received in 1997).

The non-MS News:

  • To my doctor’s credit, she did not sweep my arm’s symptoms under the “MS rug”.  Instead, she diagnosed the problem as being an inflamed tendon, much like golfer’s elbow.  She said that a similar nerve/tendon in the lower leg can also get inflamed, explaining the similar problem I was having there.  I have not received the meds yet, but she gave me a prescription for something that gets rubbed into the elbow and wrist joints, like a lotion or ointment, that she thinks will make the inflammation go away and bring my arm back to normal.  Note: This whole situation really has made me question if the pain that a lot of MSers complain of is similarly related to muscle/tendon inflammation or similar causes and not to MS, per se.  I remember a time, not terribly long ago, when pain — with a couple of exceptions such as optic neuritis — was not generally acknowledged by the medical community to be a symptom of MS.
  • She did rule out “carpal tunnel syndrome”.  So much for my “googling” skills.

And More News:

  • I’ve noticed that my arm — that same, right arm — feels extremely weak when I “exert” myself.  I first started noticing this weakness about 6 months ago: the Man and I were on a bike ride, I reached down for my water bottle and found that I could not raise my hand to my mouth.  Every ride afterwards, the problem repeated, but as time has passed, the weakness settles in at earlier and earlier phases of the ride. Dr. K. feels that this heat-triggered weakness in my arm is MS-related (or more specifically, related to the most prominent lesion on the left side of my brain).  I’m not so sure, though, because the feeling is strikingly similar to the tendon issue.  Hopefully the prescription ointment will provide a useful experiment:  after a sufficiently-long time of taking this prescription has passed, perhaps any residual symptoms can be attributed to MS.

At this point, the conversation got real interesting.  After reviewing the MRI report with me, my doc admitted that the MS diagnosis she has given was one of the few she has given that “keeps her up at night”.  The reason? Because she isn’t 100% sure of her diagnosis, due to  1) an utterly unchanging MRI with no new lesions or enhancing lesions; and 2) my excellent mobility and general lack of relapses.

She then reminded me (but I think she was doing more out-loud thinking than actually talking to me) why she was still sticking to the diagnosis “MS” for now.  She said that the optic neuritis (16 years ago) and the approximately two brain lesions could have all occurred at the same time, caused by a viral attack rather than MS.  Since the MRI doesn’t tell how old the lesions are, the MRI is unable to distinguish the brain lesions and the optic neuritis attack as being caused by different attacks separated in time (an essential criterion for an MS diagnosis).  Dr. K. said that the atrophied condition of my Retinal Nerve Fiber Layers (RNFL) in both eyes is, in fact, the additional factor that led to her diagnosis. (The implied assumption here is that the atrophy  in my eyes didn’t happen at the same time as the brain lesions and optic neuritis. But there are plenty of non-MS reasons for a thinned RNFL, so this diagnosis seems … tenuous)

Her honesty was touching:  she said that she hated giving me a diagnosis that required my having to poke myself frequently with a needle, but she didn’t want to take the gamble of no treatment only to have serious consequences later.   She stated that the label she would put on me is “benign MS”, or perhaps “Clinically Isolated Syndrome”.  In astonishing candor, she admitted that many other doctors would not give an “MS” diagnosis in my situation  (nor, presumably, would have put me on a Disease Modifying Treatment).  She even listed the hospitals (and in some instances, the names of doctors) who would, and who would not, have agreed with her”MS” diagnosis!  This honesty, my friends, is what I love most about my neuro.  In her own right, she is a true scientist:  she has admittedly sparse data on which to test a hypothesis, and she is not too proud to change her current conclusion, if additional data were to favor a different hypothesis.sci-method

Which leads to the next topic:  she is very keen for me to see a neuro-opthomolgist at UC-San Francisco. Specifically, she wants to hear from this specialist if he thinks the RNFL thinning looks like MS-related damage, or seems to be the result of a different condition (like some form of glaucoma). She instructed me to set up a follow-up appointment with her as soon as I’ve seen the neuro-opthomologist, and she seemed anxious to get going with this independent assessment.

For perhaps the very first time, I feel that my neuro and I are now completely on the same page:  really being able to get to the root of the underlying reason for the RNFL thinning is important to her because it is THE key to the accuracy of her diagnosis, a link that I think she has only recently fully appreciated.  And of course, we both want to be absolutely sure that I am receiving the right treatment (whether that be Copaxone,  glaucoma eye drops, or perhaps something else entirely) to protect my eyes against further damage.

What a ride, life!  For the past 1.5 years, I’ve been under the impression that my doc was solidly confident in her diagnosis.  Then … a physician’s confession, of sorts, that admits the diagnosis really comes down to what is causing the RNFL thinning.  We’ve sort of come full-circle, back to “Day 1”, haven’t we?  Some might get discouraged by their doctor’s uncertainty and/or having such a tenuous diagnosis.  But not me:  I appreciate that my doctor is following the scientific method, a tried-and-true method that I also follow in my professional (and private!) life, which instills me with all the “faith”  I need!

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5 thoughts on “Sometimes the MiSery is Not MS

  1. Hallelujah! I could not be happier that there is another MS’er (well for now:) who doesn’t subscribe to sweeping everything under the MS rug! I work hard not to do that. Even left a well respected Neurologist because he would argue with me and then just go “condescending” on me about pain in my leg. I only asked that he entertain that iy COULD be restless leg syndrome :/ Long story short, I left him and it is! Annnd how about this!A symptom called an MS Hug feels like (in some cases) a heart attack. Of course if you go with that “Hug” idea and it IS a heart attack, you’re in big trouble. I had fun writing THAT post. Check it out. Another reason we see things the same so often, I was a high school science teacher in my first life. I LIVED the scientific method, and still do:)
    http://msopenmic.com/2014/04/21/ms-hug-or-heart-attack/

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    • Oh my, Estizer, your infectious enthusiasm puts a smile on my face (you had me at “hallelujah”!) I think that we are definitely best-served when we dig deeper and don’t just accept the answer most convenient for the doctor. Good for you, that you had the courage to drop even a well-respected neurologist when you felt that you weren’t getting the treatment that you deserved. (There’s a future post that I’ve just got to write some day, just describing the endless chain of doctors I’ve seen over the last 15 years … “condescending” is definitely the common denominator, a character flaw that led to some awkward/funny situations!)

      And wow, I remember reading your post on your heart condition the day you posted it — so scary — and a *perfect* example of why we should just throw that MS rug out the window!

      Finally — you were a high school science teacher? 🙂 (Somehow I missed that fact while reading that wonderful blog of yours!) I bet you have inspired so many young lives! The science mission in which I am currently involved (the one that is currently on the budgetary “chopping block” — ugh!) has an extensive nationwide outreach program for K-12 educators who teach science or who interface with the public in a science setting (eg, planetariums, museums, etc), and I have so much respect for the dedication and hard work that I’ve seen in these energetic teachers!

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  2. It’s hard to find a good neuro (or any med professional) it seems. With the changing landscape in the medical/insurance world, I sometimes feel there is a true lack of caring. And I understand it.

    Sweeping things under the MS rug is incredibly common, isn’t it? When I experience aches & pains, tingly things, and etc, I assume MS but try to find other causes. I have a fear of missing out on some important dx because of an assumption.

    Here’s to a good day for both of us!

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    • Hi Sherri! Yes, finding a good med professional is nearly as difficult as finding a good partner — “you’ve got to kiss a lot of frogs to find a prince”! I’m finally quite happy with my doctors at the moment (perhaps for the first time ever!) I hope that you’ve found a neurologist that truly cares about you, as well. (And if not, don’t get discouraged but rather keep looking …” Dr. Right” is out there, somewhere!!) Thanks for stopping by!

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