The maybe MS saga continues
Thought it was time for another update in my “do I have MS? or is it some other weird neurological disorder” adventure.
In a sentence: I am having some more symptoms but they are minor, my imaging doesn’t show anything new, but my specialist thinks I have either recurrent transverse myelitis or MS.
I’ll start with a review of the timeline
- Dec 2011 Bell’s Palsy (may be unrelated) treated with steroids and antiviral. Distance vision a bit blurry at the end of the steroid course, returns to normal in a few days. Face almost “normal” in 8 weeks. Personality still weird.
- Dec 2013 in Yellowknife legs numb, wait a few days “it’s my migraine or my migraine medication.” See the ER doc and he sends me home to Vancouver
- Dec 2013 at hospital, Neuro team sees me; lesion at T10 on MRI. Admitted to hospital. MRI head and c-spine normal. LP shows no infection. Tests for HIV, Lyme, HSV negative. Cytology is not completed. IV steroids x 3 days. Off work x 6weeks, numbness gradually improving. On oral steroid taper for 10 days. Lose my distance vision (can’t focus) on the 7th day. Neurologist says it’s not the disease just the steroids.
- Jan 2014 L’Hermitte’s phenomenon started (lightening down legs when I bend my neck forward, chin to chest)
- Feb 2014 follow up T-spine MRI shows T10 lesion slightly improved but still there/enhancing
- March 2014 in Yellowknife again, I notice my right leg getting much more numb suddenly. “There’s something in my Sorel. Oh. It’s my foot.” Get home to Vancouver, can’t get in to see my neurologist, MS clinic has lost my referral, go to GP who is lovely and reassuring
- April 1, 2014 April fool’s. I see MS doctor, they order steroids IV for my recent flare, labs, follow up in a month. Hilarious attempt to work and have IV steroids at medical daycare in the hospital where I work. Surprisingly works out. Lose distance vision the day after my tx is done.
- May 2014 MS doctor. Things are going great, only get numbness/tingling/vibrating in my legs when I walk vigorously. Tests for sarcoidosis and lupus and NMO are negative. “This could be a one-off transverse myelitis after all” Hope. Basically: optimism.
- end of May 2014 at a conference in New Mexico, wake up and arms are numb, 3 days in a row. “Slept funny” “must be the hotel beds” No.
- call MS clinic and they move up my MRI to July; MRI head and c-spine done at end of July
- Aug 2014 see MS clinic . . .
That brings me to yesterday and today’s appointments.
Yesterday I saw an MS Fellow first. History taken, examined again. On exam, I have decreased sensation to sharp (pinprick) in distal arms/hands. Surprisingly – I hadn’t checked in a long time – it is also still decreased in my legs.
She reviewed my scans. Maybe “artifact” in the brain stem. A radiological artifact is just like a glitch in a video, something caused by the machine or movement of the patient. The resident mentioned that the “non-specific lesion in occipital lobe” is stable compared to previous scans. This lesion was never mentioned to me before. Hmm… Lots of silence as the Fellow scrolled through my images and Ian and I did our best to stare at our feet. Eventually, he and I made quiet conversation, passing the time. I would have welcomed rambling from the Fellow.
Then MS doc came in. The long and short of it is that he doesn’t know what I have or what to do about it. If it is MS, we should treat now and with MS drugs. If it is not MS, it could be recurrent Transverse Myelitis which is rare, and we should treat with different drugs. My scans showed no new (definitive) lesions, so they cannot label me as MS or recurrent TM. Yet.
[EDIT: I forgot to say that the MS doc said the lack of lesions on scan is not conclusive; often with mild sensory changes (what I have) a tiny lesion is the cause and is missed on MRI]
We want to treat, but what are we treating?! Are the side effects worse than disease? I explained my bias: as he rattled off different drug names “I like this one, it’s good for people with active lifestyles, and you can get pregnant on it” etc. all I could think of were all the patients I had seen with horrible side effects. I mentioned a patient who was on Mycophenolic acid, who developed disseminated CMV and was quite sick. I didn’t say it, but I was also thinking of a patient who was on Rituximab who had severe bone marrow suppression and lymphadenopathy. I explained “my bias is that in my work (as a hospitalist), I see only sick people, people who have the bad side effects of these drugs; I don’t see the good outcomes.”
MS doc suggested a pulse of steroids. I questioned whether this would change the outcomes and he said “maybe.” I might get relief for my tingly hands fairly rapidly. And IF they get a whole lot better, that might imply a spinal lesion, as these tend to be more responsive to corticosteroids. IV has been a hassle in the past and so I asked if we could go with oral (prednisone). Yes. 650mg (correction) twice a day for 3 days. “Okay, but I’m worried I will lose my vision again. I kind of need some reassurance that my vision will recover.”
Today I saw a neuro-ophthalmologist at the MS Clinic. She examined me and seemed surprised that I passed all tests with flying colours. I guess most people going through the MS clinic already have some visual issues. I asked about the steroids and blurred vision, telling her that I was “okay” with it so long as she could reassure me it would not be permanent. She explained that while she could not guarantee anything, she had lots of patients who had this issue. She described the mechanism of increased salt/water and sugar, and how this might distort the lens and change its refractive characteristics.
She did my intraocular pressures and they were normal, reassuring me I don’t (yet) have glaucoma. She offered to see me again while on prednisone so that they could measure the change in my vision but I was satisfied enough with her explanation. I did, however, leave the clinic with a plan for visual field testing and a picture of the retina to be done in the next month or so. This will be a baseline and it may help in diagnosis if grossly abnormal.
So now, I have new symptoms but I am no further along in the process. I’m lucky to have such experts looking after me and I realize the disease has to declare itself before anyone can be expected to know what to do.
It’s just hard to plan for the future not knowing what might happen. Though I know it is impossible for anyone to know the future, it was something I was blissfully unconcerned about before. Until this year I felt I could do anything I wanted and would just go for it. Now, I’m afraid. And I’m ashamed that I’m afraid. I’m supposed to be strong. I’m supposed to forge ahead no matter what. However, I don’t want to make plans that I can’t keep and let someone (including myself) down. For example, I’m supposed to go volunteer at a clinic in Zambia for 3 months next year. I am currently physically able but I wouldn’t want to go if I was going to get sick while I was there, or if I’m on some sort of IV treatment that has to be done in the middle of that trip. And I wouldn’t want to leave them high-and-dry without a physician. Maybe it’s better just to cancel.
Now that I know I have some kind of illness that seems like it is going to surprise me on a regular basis, I’m thinking in a way I never imagined I would before. Should I expect a long healthy life as a working GP? Do I need a less physical job? Should we build a ramp to our house just in case? Am I ‘disabled’? Is my fatigue related to the fact that I work a lot or is this the MS fatigue everyone talks about? Is my mood lower now than what I remember because I’m learning to cope with something new or could I be depressed?
Last year I read “Man’s Search for Meaning.” Viktor Frankl, the father of Logotherapy, wrote:
When we are no longer able to change a situation, we are challenged to change ourselves. . .
The one thing you can’t take away from me is the way I choose to respond to what you do to me. The last of one’s freedoms is to choose one’s attitude in any given circumstance.
I know that the only thing in my power is the attitude with which I approach all of this. It’s just hard to be optimistic, realistic, pragmatic, open, stoic, vulnerable, and “ok,” all at the same time. When you realize that you might have to make concessions, it’s hard to accept. “Oh you can still do anything you want despite it…” Yes. It’s not a physical disability that will stop me. It’s my own mind that might ultimately be the thing I can’t overcome.
Thus, main treatment is not some immunosuppressant or some vision-whackifying corticosteroid, but rather an injection of logotherapeutic thinking.