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Published 27 July 2016

Symptom Accounting

Below is a list of the MS symptoms and disabilities that I've had to deal with during the course of my affliction. There's also an accounting of any resolution if any. This accounting will be updated as symptoms change. My first MS attack was in April 2013. My HSCT Day Zero was on June 5th, 2016. On July 1st, 2016, I made a significant increase in my pain medication. Improvements notated in this chart are ongoing.

My MS to HSCT disease timeline

April 2013 - first symptoms of MS
Nov 2014 - MS diagnosis
Feb 2015 - began Rebif DMT
Mar 2015 - aborted Rebif due to relapse
Apr 2015 - began Tysabri DMT
Feb 2016 - aborted Tysabri to washout for HSCT
May 2016 - began HSCT
June 2016 - completed HSCT (June 5, 2016 "Day Zero")
Dec 2016 - HSCT six-month recovery milestone
March 2017 - HSCT 9 month recovery milestone. Maxed-out tegretol dose, more pain returns.
Aug 2019 - Add Lyrica medication for improved pain reduction
Nov 2020 - Add N-acetyl glocosamine (NAG) suppliment

Symptom List

  • Inability to balance, dizziness
    Frequent symptom. First experience April 2013, continual worsening through date of HSCT. Partial recovery by Dec 2016. Better recovery by Aug 2020

  • Inadequate thermoregulation, heat sensitivity
    Frequent symptom. First experience January 2015. Temporary blindness getting out of a hot shower. Mostly resolved by January 2016, likely through change of diet. Fully resolved by Dec 2016.

  • Sharp pain across shoulders
    Frequent symptom. First experience April 2013. Mitigated with medication.

  • Sharp pain in left shoulder, deltoid & triceps, nerve hypersensitivity under facia
    Frequent symptom. First experience May 2013. Mitigated with medication.

  • Dead pain down left arm and into wrist
    Infrequent symptom. First experience Summer 2015. 75% Resolution shortly after HSCT. Further resolved with medication.

  • Dead pain in right forearm
    Very infrequent symptom. First experience Summer 2015. 75% Resolution shortly after HSCT. Fully resolved by 2017

  • Regular numbness in both arms while sleeping
    Nighly symptom. First experience sometime in 2014. Resolution shortly after HSCT.

  • Left hip numbness, pins & needles, spasticity
    Very frequent symptom. First experience mid-2013. Partial resolution by summer 2016. Further resolution with medication.

  • Left hip lateral weakness
    Persistent symptom. First noticed early 2015. Problem at worst by summer 2016, just after HSCT. Partial recovery as of Dec 2016. More resolution with exercise as of 2020.

  • Left knee control/weakness
    Persistent symptom. First noticed March 2013. Problem at worst by summer 2016, just after HSCT. Partial recovery as of Dec 2016. Walking is a little better if I work hard. More resolution with exercise as of 2020.

  • Left foot weakness
    Persistent symptom. First noticed March 2013. Partial recovery of strength as of Dec 2016. Significant recovery with exercise by 2021.

  • Left leg atrophy
    Persistent symptom. First noticed December 2015. Some recovery after vigorous exercise.

  • Left leg foot drop
    Persistent symptom. First noticed July 2014. Minor recovery after vigorous exercise.

  • Left arm and hand weakness
    Persistent symptom. First noticed Summer 2015. Significant recovery by late 2020.

  • Right upper leg, lower leg, foot burning pain
    Frequent symptom. First noticed June 2013. Significant resolution likely due to medication.

  • Right big toe numbness
    Infrequent symptom. First noticed Winter 2015. Full resolution shortly after HSCT.

  • Brain fog
    Frequent symptom. First noticed Winter 2014. 75% resolution by Winter 2015, likely due to diet change or Tysabri. More resolution by 2020, yet this is still a problem partially due to medication and age.

  • Fatigue
    Frequent symptom. First noticed Summer 2014. 50% resolution by Winter 2015, likely due to diet change. Mostly resolved by 2020.

  • Inability to find simple words
    Frequent symptom. First noticed early 2015. 25% resolution by Winter 2015, likely due to diet change. More resolution by 2020, yet this is still a problem partially due to medication and age.

  • Lhermitte's Sign
    Frequent symptom. First noticed March 2013. Mostly resolved shortly after HSCT, likely due to procedure & medication. Fully resolved by 2019.

  • Ringing in ears
    Frequent symptom. Unresolved. Likely due to medication.

  • Tremor/Spasticity
    Semi-frequent symptom. Mostly resolved by 2020.

  • Slurred speech
    Infrequent symptom. First noticed Summer 2015. Mostly resolved by 2019.

  • Eye pain
    Frequent symptom. First noticed Summer 2014. Mostly resolved by Summer 2015, likely as a result of diet change or Tysabri. Further aggravated by the head and neck position I've adopted to manage pain: this position forces unnatural eye position to look upwards.

  • Double-vision, inability to focus
    Frequent symptom. First noticed Summer 2014. Mostly resolved by Summer 2015, likely as a result of diet change or Tysabri. Still persists when tired. Likely due to medication.

  • Puritis
    Infrequent symptom, usually at bedtime. First noticed Summer 2014. Somewhat resolved by Winter 2016. Partially due to medication.

  • Depression
    Frequent symptom. First noticed Fall 2014. Depression level seems to be directly proportional to sustained pain levels. Mostly resolved shortly after HSCT, likely due to an increase in pain medication and pain relief. Fully resolved in 2020 when not experiencing long or severe pain episodes.

Important Timeframes

  • My Stem Cell Transplant Date: June 5th, 2016
  • Treatment duration: 4 weeks
  • Typical onset of disability reversal: +9 months
  • Typical complete recovery from procedure: +1 to +2 years
  • Typical maximum reversal of disability: +2 years

Disclaimer

I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.

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