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
- 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.
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.
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.
Infrequent symptom, usually at bedtime. First noticed Summer 2014. Somewhat resolved by Winter 2016. Partially due to medication.
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.
- 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
I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.
- AHSCT and Progressive MS. Conflicting Studies (Year 6.4) - UPDATED
- Check-In (Year 5.2)
- No New Activity on MRIs (Year 3.6)
- Bloodwork Back To Normal (Year 3.3)
- Why Neurologists in the US Don't Recommend HSCT (Month +35.8)
- Better Pain Management (Month +33.6)
- Final Re-Vaccinations & The Medical Cannabis Primer (Month +32.9)
- "Sustained Decrease in Disability" (+30.6 months)
- No Progression Seen on MRI (Month +29.7)
- Cruising Along (Month +29)
- Nerve Decompression Surgery (Month +21.8)
- Looks Like It Worked (Month +17.2)
- Further Pain Improvements (Month +15)
- Significantly Lower Pain (Month +14.4)
- More Thoughts About MMJ, Meds & Pain (Month +13)
- +1 Years and Counting! (Month +12.6)
- Better & Better (Month +11.5)
- Major Pain Improvements. Finally. (Month +10.6)
- DIMS, SIMS and the Medicine Cabinet in the Brain (Month +9.6)
- Sliding Sideways ( Month +9.2)
- Pain, Pain, Go Away! (Month +8)
- Doctor: MS in Remission! (Month +6.75)
- Neuroplasticity (Month +6.1)
- Hopefully, My Last MRIs, Forever (Month +6)
- Chemobrain (Month +5.2)
- Kickin' and Screaming (Month +5)
- Month +3.7 Progress Report
- Fresh Foods Welcome! (Month +3.2)
- Thoughts About Pain (Month +3)
- Making Good Progress (Week +12)
- First Followup Rituximab Infusion scheduled (Week +9.5)
- Walking Towards Improvement (Day +54)
- Neutrophils Recovering Appropriately (Day +39)
- Less Pain Lately. Horray! (Day +25)
- The Highs & Lows of Recovery (Day +22)
- Homeward Bound (Day +12)
- Treatment Complete (Day +11)
- Final leg of the procedure (Day +10)
- Healing fast! (Day +8)
- Neutropenia (Day +6)