I started 3 gms/day, one week ago, of Thiamine HCL orally. No benefits evident yet.
I am 68 yrs old, muscular 230 lbs, advancing progression of symptoms. Frequent PK and essential tremor; freezing; poor sleep; etc. I take C/L 25/100 ... 2.5 tabs 3 x/day.
When should I hope to see positive results on symptoms?
It took 3 to 4 months for me to experience most improvements, which is typical.
Except for constipation - normal peristalsis was restored in the first week or 2.
TRACKING improvement
FIRST STEP: a UPDRS test, a push test with video, a walking and turning test with video, a talking test with video and possibly a writing test with video, standing from seated on hard back chair video with your arms crossed. These videos are kept on file to be used for comparison with future videos. This is a fairly accurate means of documenting improvements over time as it is actually fairly easy for some people to not realize how much they have improved over time.
Scoring of the retropulsion (pull) test as defined by the MDS – UPDRS scale.
0 – Normal – Recovers with one or two steps
1 – Slight – Three to five steps, but patient recovers unaided
2 – Mild – More than five steps, but patient recovers unaided
3 – Moderate – Stands safely, but with absence of postural response; falls if not caught by the examiner
4 – Severe – Very unstable, tends to lose balance spontaneously or with just a gentle pull on the shoulders
When did you receive the diagnosis?
April 2017 but unrecognized symptoms present for years earlier...
It took about 2 months for me to begin seeing changes. The first thing I noticed was relief from debilitating fatigue. Over the next 5 months I experienced other improvements:
* left arm swing regained
* left leg drag gone
* left side joint pain gone
* word recall problems gone
* urinary urge incontinence gone
* internal tremor gone
I started B1 in November of 2018, not long after my diagnosis. My current/remaining symptoms are moderate tremor and significant bradykinesia in my left hand and arm, dystonia in my left hand and arm, and occasional mild tremor in my left leg. B1 has not helped those things in any noticeable way.
I started taking mannitol in May of this year. It has given me back my sense of smell (and consequently, my sense of taste, which has improved my appetite), and also reduced my dystonia. Mannitol also seems to be helping my energy levels and memory.
Hi did you titrate up on Thiamine or go directly to what you thought dose would be. Sorry to learn that Dr. Costantini died of Covid19 after a surgery. Loss for folks with PD.
How long into your PD before you had visible tremors? Hand/foot movement?
Vitamin B-6 overdose risk in the Hinz Protocol (a.k.a. Amino Acid Therapy)
How long before levodopa starts working when first introduced?How long were you in the prodromal stage before your tremors were visible to the public?
Looking forward for your support
