Hi. Thanks for your interest. I asked about this because I am still searching for any factors that may have come together to cause what has happened to me. This is a complex and long story. I have had very appropriate care from my Internist to primary neurologist, extensive testing, and referrals to tertiary care specialists. I will try to list major time line elements. Hopefully that will get to some of your questions,
Some minor changes in gait and some unexplained falls occurring as far back as 2016-17. Neuro workup and imaging.
2018 -Spinal stenosis dx with L3,4,5 spinal fusion. Complete recovery. Full activity.
2019 L total knee replacement. Excellent recovery. Very active.
2021 Torn left hamstring with surgical repair. Very good recovery.
2022 February - Traumatic fall. Pain initially but lessening with time and mobility increasing steadily. Did not seek medical cate
Fall of 22 Increasing concern about gait becoming abnormal and experiencing increasing back pain.
Dec 2nd of 2022 -Spine film showed fx of L1 subsequently had Kyphoplasty.
December 15th 2022 - I had my 1st episode of loss of balance. Single episode, Not dizziness or fainting or spinning sensation but actual loss of balance,
2023 Early spring - gait abnormality continues to be concerning Referred to PT for balance improvement. Had EMG etc. Only slight changes noted. Had to stop PT as back pain getting much worse.
More films etc. I have significant issues throughout my entire spine- degenerative changes. Plus significant osteoarthritis in many joints.
Neurosurgeon felt the bundle of symptoms at this time is related to lower spine following my fusion from 2018. "Straight back syndrome". Plan was to schedule major surgery to correct that whole area.
Mid March 23 - Waiting to get on surgery schedule.
Late March - over very few days symptoms became much worse. Balance so bad I had to use a walker just to get around my home. Then suddenly lost some sensation in both feet, Then unable to wiggle my toes both feet or lift either forefoot. And loss of sensation became worse. Only lower extremities.
March 31st 2023 Saw neurosurgeon and my primary neurologist regarding how I was losing function. Repeated EMG and sensory testing showed major change from what it was 10 or so days before. "Demyelinating Neuropathy".
March 31st -Hospitalized for GBS treatment - 5 days of IVIG, spinal tap, etc.
April 5th - Discharged using walker 99% of the time. Still cant wiggle toes or lift forefoot but is not getting worse. Started outpatient rehab.
April 2023 through Sept 2024-Various tertiary referrals, imaging studies and extensive laboratory testing in attempt to get definitive diagnosis. Almost all testing was normal. Ataxia screen resulted in a positive for my being a carrier of a pathologic recessive gene POL G (mitochondrial disorder) that can rarely cause ataxia in an older population when usually this is expressed neonatally or very early childhood.
April 5th- Discharged using walker 99% of the time because of poor balance combined with bilateral footdrop. Started outpatient rehab.
April 23 through Sept 24 - Various tertiary referrals and extensive laboratory testing in attempt to get definitive diagnosis. Almost all testing was normal. Ataxia screen resulted in a positive for my being a carrier of a pathologic recessive gene POL G (mitochondrial disorder) that can rarely cause ataxia in an older population when usually this is expressed neonatally or very early childhood.
Continuing rehab including aquatic therapy. Now using one prong cane and flexible OFA on left foot only. Early on I wore rigid OFAs on both feet. I use walking sticks for outdoors and irregular surfaces. There are ups and downs but general trendline is improvement over 17 months.
Getting IVIG every month now as a trial since April of 24. Also have had a couple steroid trials in the past. In Nov we will review and game plan. I have follow ups with other referrals coming up also. Not done by a long shot.
So we are still wondering what all is involved here.
Cerebellar issue? Parkinson variation? Spinal issue? CIDP?