Thursday, September 19, 2013

A Patient's View of Multiple Sclerosis


Recently, while working in a rural agricultural town in Colorado, I walked into see a patient, who had been coming to this particular family practice for 20 years.  She had initially been diagnosed with multiple sclerosis 25 years ago, when she and her husband had been living in Denver.  For the first few years she had been seen at the multiple sclerosis center, based out of one of the community hospitals in Denver.  It had a large referral base from six surrounding states. 
Georgia told me that she was very happy with the care she received there from a physician who was very compassionate and willing to work with her.  When he retired, she saw his colleague, but didn’t get along with him, so she quit going, and hence hadn’t received care for her MS since.
Then her husband, a dentist, decided to accept a position in this rural, agricultural town that I was working in. During this time, Georgia had learned to handle her multiple sclerosis relapses through mental determination, rest, tylenol/motrin and lots of physical therapy.  She knew that it would eventually go away, it always had in the past.  But with each episode (thankfully they only came along every few years) she was left with a little more pain and disability to chronically live with. 

Risk Factors:

--genetic predisposition among Northern European Caucasians
--increased risk with increasing latitutde, which implies a potential environmental trigger
--Vitamin D deficiency
1/400,000 people affected, femaile to male ration of 3:1.
--usual presentation between the ages of 20-40.

Signs/Symptoms of Multiple Sclerosis:

optic neuritis (pain in the eye with loss of vision)
myelitis (inflammation of the spinal cord with sensory and/or motor loss below the affected area)
muscle spasticity/pain
electric shock sensation provoked by head/neck movement
changes in bladder and bowel function
dizziness

Then there was the day that I saw her in clinic.  Georgia was complaining of non-stop diarrhea, low back pain which almost had her immobilized.  She also had generalized abdominal pain with referred pain down both legs.  To say it mildly, she was miserable. 
I ended up working up her diarrhea/abdominal pain and got a MRI of her back.  Her diarrhea was caused by her MS (no surprise there), as was her lower back pain/abdominal pain which the MRI revealed was due to partial myelitis (another sign of active MS).  I gave Georgia some lomotil to control her diarrhea, and Cymbalta to help control her pain.  But that still left her with her MS, in its acute flare-up.


Diagnosing MS:

Done by doing a MRI of the brain which needs to show white matter disease (the brain, typically black on the MRI shows white spots within it)

Over the course of working her up, I ended up seeing her three times in a two weeks.  Each time I saw Georgia I continued to try to counsel her that she needed to return to Denver to be seen by a MS specialist.  Georgia’s memories of the last MS specialist she had seen were still so strong that she would barely even discuss this with me.  I kept trying.  I gave her loads of updated information on MS, the newer treatment modalities available and what she could expect from them.  She brought them home for both her husband and her to read.  She later told me that her husband had devoured the information, and had even looked some additional information up on the internet.

It wasn’t until I kept reiterrating (over the three clinic appointments) my having previously worked alongside Dr. James (pseudonym), a MS specialist who saw patients at the medical school in Denver, how compassionate he was, how willing he was to work with patients, how caring, kind and friendly he was with all of his MS patients, that she finally relented and gave me permission to make her an appointment with him. 

Clinical Course of MS:

MS can take one of three pattersn: relapsing-remitting (my patient), secondary prgoressive or primary progressive. 

Treatments Available:

--interferon based (interferon beta)
--monoclonal antibody (natalizumab)
--anthracycline based (mitoxantrone)
--glatiramer (copolymer of four amino acids)
--fingolimod (phosphate modulator that restricts activated lymphocytes)
I quickly called and made the referral.  I asked the receptionist to make it an urgent appointment due to the patient’s symptoms.  Thankfully, there was a cancellation and my patient was able to take this appointment, two weeks away.  She would have to be in a car for two hours driving back to Denver to see him, but I knew it would be worth it.  The next day she called in to leave me a message.  Her husband was so estactic that she had finally decided to pursue treatment again for her MS, that he had taken the day off from his dental practice and was going to take her up to Denver himself. 
Fortunately I was still working at this clinic when she showed up six weeks later.  She hobbled in, using a cane, but had the biggest grin on her face you would ever see.  She told the clinic secretary that she had to talk to me. 
I was just coming out of one of the exam rooms when I saw her at the front desk.  I motioned for her to come on back into one of the empty exam rooms, which she did. 
“So, tell me I want to know what Dr. James said.”
With tears running down her cheeks, “Sharon, you were so right.  He is the kindest, most compassionate physician I have ever met.  My husband just thought the world of him.  He’s started me on a oral medication, Fingolimod which is working wonders for me.  I saw him two weeks ago for follow-up and I’m supposed to go back in two more weeks for another follow-up.  The medicine is working so well for me that I’m back doing physical therapy and am able to walk short distances again.  I can’t thank you enough.”
“Oh, I’m so glad you went, because he was exactly what you needed!  I’m happy that you finally found someone you can work with.”
“So am I, so am I!”