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Scream by Edvard Munch, 1893

With most journeys come obstacles and mine is no different.  I have been silent for a couple of months now because my MS guided journey hit a blip.  I started this blog to give other MS sufferers hope and perspective.  Suddenly I found myself in a state of hopelessness as the events I spoke of in my previous entry, “The Tangled Garden” unfolded.

My appointment that followed that post didn’t provide the answers I had hoped for.  I wanted Dr. K to show me the MRI’s that had been in question, side by side, or at least one after another so I could see for myself what she saw that the “Plan B” specialist did not.  My thought was that I would either regain faith in my specialist, or know that it was time for a new doctor.  Instead I found myself being shown all my MRIs beginning with my latest taken that morning and going back to the first as Dr. K pointed out the various active lesions.  She clicked through the results, pointing to lesions and showing me what my brain should look like compared to what was showing on my MRIs.  She quickly pointed out that my latest showed nothing new on my brain, only one new lesion on my cervical spine. By the time we got to the MRIs that were in question, I was already emotional.  My husband came into the appointment with me for the first time and somehow it made me feel weaker.  I was never really shown what I was looking for, or else I was just too upset by the time it was presented.  My husband seemed to think she showed us all the lesions in question.  She explained how she was very particular and that she looked at these things all day long thus making her an expert, while it was harder for most to see certain things.

Dr. K seemed defensive from the start of the appointment because she knew I was questioning the “Plan B” discrepancy, yet she stated that multiple opinions were good and that she was on my team wanting for me to have only the best treatment.  She said that she would like to introduce me to some of her colleagues, particularly the director of the center at my next appointment, which she suggested we move to 3 months rather than the usual 4.  She also explained that the philosophy of this MS center was to knock back the active lesions with Solu-medrol infusions and that nearly every patient at their facility was treated with these steroid infusions and at some other centers, no one received them.  She said that the good news about my lesions was that they were active and therefore treatable with steroids.  She was strongly urging me to have the infusions, beginning that very day with a second treatment the following day.  Once monthly infusions would then be prescribed for the next few months.  This new medication was going to be in addition to the daily Copaxone injections.

Of course I was feeling quite vulnerable by that point and when my husband asked why I needed this medication if I didn’t have any new outward symptoms, I became angry, thinking he just didn’t want to have to bring me back to the city again the next day for the second round.  I said that I didn’t want to appear to be a difficult patient or miss an opportunity to fight this disease and so the next thing I knew I was having an IV line inserted and Solu-medrol began to drip into my bloodstream.

After my infusion I went to the scheduling desk to make my next appointment to follow-up with Dr. K.  It was there that I learned that she was actually leaving the practice.  She never bothered to mention it during my appointment.  I was told she was leaving at the end of June.  I guess that is why she decided she wanted to see me in June rather than July.  Being fresh off the steroid line, my mood wasn’t prepared for this news.  It’s not that I had a particular emotional attachment to her in any way.  After all, she was the one who had caused my tangled garden.  I guess I should have been happy.  It appeared to be a good solution in that I got to stay at the nationally famous MS center but with a new doctor, thus giving me another opinion. The worst of it though was that she didn’t tell me she was leaving and I now had the Solu-medrol flowing in my bloodstream, the drug prescribed by her, the doctor who was causing me to question everything.  I told the scheduler that I wanted to make my next appointment with whomever I was being assigned to.  I was no longer interested in wasting my time with Dr. K.

Solu-medrol leaves a terrible taste in my mouth, literally and figuratively. Solu-medrol makes me feel weak, again literally and figuratively.  Solu-medrol leaves me with writer’s block.  Tomorrow will be the third such treatment as I have a visiting nurse scheduled to arrive first thing in the morning.  I am thinking it will be my last.

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