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My spine update: Still not sure, but got the right people on the case

April 2, 2014

Today I officially join the ranks of the chronic, autoimmune, neurological patients.

I saw the experts at the MS clinic. A Fellow from the US, the head of the clinic, a remarkably efficient nurse, the quick and able lab tech at the hospital, and finally the medical daycare nurses.

Short story: no official diagnosis yet, and may never have one. Have had 2 or three events proving dissemination over time, not sure about dissemination over space. Both are required to say “YES, MS! We factor in my previous Bell’s palsy, my first episode in December, the emergence of l’hermitte’s sign (bending neck forward sends a zappy/tingle down my legs) in January, and what seems to count a relapse in early March. The only radiological lesion is at T10 on my spinal cord. Head normal so far. So I don’t have dissemination over space, technically, not yet anyway.

 

We discussed the differential diagnosis and were able to rule out a few things with the tests done so far: HIV, Hep C, neurosyphilis, HSV, cryptococcus, lyme disease, TB; with history and the pattern of things and statistics, we concluded that brucellosis (exposed), cat scratch fever (scratched), scistosomiasis (swam in amazon), lymphoma are all quite unlikely. Basically it’s inflammation, not infection or cancer, using the information we have so far. What kind of inflammation is less clear, but it’s acting like MS.

The summary/plan is:

  • some lab tests today to rule out NMO (my clinical picture and MRI don’t fit this, so I won’t explain it more), neurosarcoidosis (pretty rare, but the Fellow said that if a follow up MRI of a lesion is still enhancing aka lights up with MRI dye a few months after the original symptoms (and mind did, though it was less lit up), this is more characteristic of sarcoid than MS; one test related to sarcoid can also rule out lupus
  • might have “recurrent Transverse Myelitis” – pretty rare; treated slightly differently than MS, more general immunosuppressants
  • statistically, MS is most likely though it’s not easy to label me with that, yet
  • boss doctor recommended IV steroids “as soon as possible” so, I had a dose this afternoon
    • originally, I understood that while they might help me feel better sooner, they don’t change the degree to which I recover nor the outcomes with MS
      • however, if I have recurrent Transverse Myelitis, there is anecdotal evidence (per boss neurologist) that it might change outcomes.
      • risks of pulse steroids are not so bad as a prolonged course; I’m trying to be a good patient, trust the process, express my goals/values, so I’ll give it a go; if it helps me get back to tolerating exercise sooner, it would be worth it
    • getting my IV steroids was fun! the nurses were lovely, the building sunny, the company (other patients) nice to chat with; one of the nurses seemed to take a motherly shine to me, I even got a hug and kiss and her best wishes. That sure made me feel cared for!
    • tomorrow, I’m working. I’ll take a brief break from work to pop-over to medical daycare, get my massive dose of IV solumedrol, and finish up the work day. Not ideal, might raise some eyebrows, but I don’t want to leave my colleagues high and dry,  and frankly, I really enjoy my work and would rather be doing that than worrying or stewing on the subject of my health. I’ve done enough of that already.
  • follow up 1 month to see where I’m at
  • repeat head MRI to rule out new plaques; apparently MS people get about 4 new plaques a year, so in 6 months from my previous scan, we should see something if it is MS
  • repeat cervical-spine MRI to assess the l’hermitte’s; it’s usually related to a c-spine lesion but there was nothing on my original scan (and thoracic lesions can produce this, though less commonly). However, this odd symptom developed almost 2 months after my original symptoms so maybe it represents a new lesion.
  • I probably need to be on some fairly serious treatment but I’m not sure when/what, what’s covered by my health plan, etc
    • immunosuppressants can be toxic and dangerous; not safe to be pregnant, could stop for a while if I want to have a baby
    • pretty big decision; my MS neurologist’s bias is towards aggressive care: “hit it hard, fast, early and quiet down the immune system”, mine is to “less is more” but that includes “right care.” In this case, there’s little evidence so it’s going to be a question of balancing risks and benefits into the unknown

 

What I learned:

  • I should take a lot of vitamin D (4000units/day).
  • There is a pill that might help with my migraines as well as with the neurological symptoms that I currently have (nortriptyline) but we will hold off for a bit on that. (I thought they might suggest gabapentin but I would have less confidence in that)
  • the weird feeling in my legs (vibrating/jangling/buzzing) is not necessarily a result of activity per se more one of heat intolerance. Apparently whenever the core temperature raises, as with exercise, the nerves that are damaged (MS/TM means the myelin or coating on the nerves has been destroyed by an autoimmune response) have trouble conducting. So, “cool off and resume” is the recommendation. Interesting!
  • vaccines might trigger flares/relapses; next elective one is the flu shot in November so at least we have until then to consider it

 

And that’s as much as I know. I was delighted to see a team who have had encounters with other patients with similar findings. Their experience is the best evidence that exists so far. This makes me glad that I incidentally used to fundraise for the MS Society (after a dear friend was diagnosed). I also laugh now at the fact that I used to use “Dre Moelle Épinière” to fill out BS forms for online subscriptions etc. when I didn’t want to put my real name in the medical-spammer-verse. That is french for (Dr) Spinal Cord.

I must also mention how great the Fellow was. She heard me. She answered my silly little questions that meant a lot to me (like “why do I get this horrible feeling in my legs when I’m active?”. She had happened to have some serious health issues herself, and understood what it was like to be an MD and a patient. I hope that I’ve absorbed even more from today to make me the most compassionate, realistic, and thoughtful partner and expert in care I can be.

 

Also, I hope I figure out how to take care of myself.

7 Comments leave one →
  1. Janet Sinclair permalink
    April 2, 2014 11:00 am

    Jessica, if anybody can figure it out, you can. you are one of the most resourceful people I know – we built the SCI Team on your strengths as a student leader – all those years ago! Just wanted you to know I am tinking about you – and I am in Nanaimo now working at VIU

    • April 2, 2014 5:58 pm

      Thanks Janet that is very generous. I’m living in Vancouver now though I do miss Nanaimo! Hope you are enjoying the quieter pace.

      Like everything it takes a little time to wrap one’s head around it but then, just gotta push forward and take it in stride.

  2. Patricia Garison permalink
    April 5, 2014 1:26 pm

    I wish you well in your diagnostic and treatment journey. Just wondering if you shared my experience with steroids – approximately two days after getting injected, I awake bright-eyed and bushy-tailed (well, about as bushy-tailed as I can get these days) with a sense of omnipotence. “I can conquer the world! I know everything!! I need no sleep whatsoever!” If I am ever asked, my drug of choice is definitely Special K … kenalog …. administered epidurally – very, very carefully – in the C5-7 general area. Ahhh. Thank you so much. (I have that neck-bending-down-the-leg-thing and, even though I’m a nurse, I didn’t realize it had a name or there was a great deal of significance to it. If it doesn’t involve the heart, I’m often stumped.) Tricia, RN

    • April 5, 2014 2:09 pm

      thanks Tricia!

      yeah I get a bit jazzed up on the steroids (IV) but also they make me lose my distance vision so it’s not that fun over all! Haven’t got into epidural territory yet. We’ll see! And for the record, most physicians don’t know about Lhermitte’s sign. Just happened to be something I’d remembered from my reading way back.

  3. April 15, 2014 12:31 pm

    Keep it up Jes. You impress and inspire me.
    Best regards

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