After 2 yrs (denial) no Neurologist (N) with lots of symptoms I finally saw a N today. Short sharp professional and incisive tests in rooms. Suggested Parkinsonism is a motor syndrome that manifests as rigidity, tremors, and bradykinesia...ordered MRI & on the notes to the Clinic
" Parkinsonism feature, M-/ for MSA or RSP feature." and ticked the "Demyelinating disease" box
He deflected 80% of my Bowel / Tingling hands / Lost my signature questions...I had done my own homework and I'm not surprised re MSA .He Ordered my current L/C 100/25 x 2 per day to 3 per day now. Encouraged me to start Tai Chi. See what MRI finds.
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MellowYellowcup
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If it is determined that it is MSA, there is little available that helps MSA, but the following two human/MSA/Ubiquinol studies may be of interest to you while you are still at an earlier disease stage and especially considering the lack of available options :
' The current study suggests that high-dose ubiquinol supplementation (up to 1200 mg/day) is tolerable and improves cerebral mitochondrial oxidative metabolism, which may alter the natural history of MSA progression especially when applied in the early phase of MSA in patients with genetic defects in the CoQ10 biosynthetic pathway. Further clinical trials including administration of ubiquinol to MSA patients carrying heterozygous COQ2 mutations as well as to patients without mutations in COQ2 are warranted. Prospective randomized controlled trials will be undertaken to further extend these initial promising observations. '
This second multicenter, randomized, double blind, placebo controlled phase two trial from a 2023 study, I believe by the same research team, using an even higher dose of ubiquinol (1500 mg/day) further tends to confirm the benefit of Ubiquinol, a significantly more bioavailable form of CoQ10, in people with MSA :
' Between June 26, 2018, and May 27, 2019, 139 patients were enrolled and randomly assigned to the ubiquinol group (n = 69) or the placebo group (n = 70). A total of 131 patients were included in the full analysis set (63 in the ubiquinol group; 68 in the placebo group). This study met the primary efficacy outcome (least square mean difference in UMSARS part 2 score (−1.7 [95% CI, −3.2 to −0.2]; P = 0.023)). The ubiquinol group also showed better secondary efficacy outcomes (Barthel index, Scale for the Assessment and Rating of Ataxia, and time required to walk 10 m). Rates of adverse events potentially related to the investigational drug were comparable between ubiquinol (n = 15 [23.8%]) and placebo (n = 21 [30.9%]). '
Given the known safety profile of Ubiquinol in humans, combined with the known progression rate of MSA and the lack of effective treatments available from the medical community as well as the fact that these studies are suggesting that ubiquinol may slow disease progression especially in earlier stage disease, it seems worth asking your doctor if you can start on the titrated dosing of ubiquinol up to the 1500 mg/day level over a dose escalation course that mirrors the one used in the 2023 study, prior to a final determination of you having MSA.
In short, ask your doctor if you can start high dose ubiquinol immediately with an escalating dose schedule as used in the 2023 study, even prior to an actual final diagnosis of MSA. Show your doctor these two MSA/Ubiquinol studies for him to review.
Lastly, but still very importantly, I don't know where in the world you are, but if you are in an area of the world where you might have access to Fecal Microbiome Transplantation (FMT) where they take feces from a very healthy, screened and tested donor and transplant it into your gut, you might want to give very serious consideration to that option as another means of dealing with MSA, if it is available to you. The following study is not an MSA study, but rather a progressive supranuclear palsy (PSP/FMT) study that illustrates the usefulness of FMT in another serious type of neurodegenerative disease :
' Our findings suggest that, compared with placebo, FMT treatment significantly improved motor and nonmotor symptoms in patients with PSP-RS, as well as reduced intestinal inflammation and enhanced the intestinal barrier by regulating the intestinal microbiota composition. '
I'm sorry for being so cold and clinical about this, but this is MSA, not PD and time is of the essence.
There is an MSA Forum on HU which you may find very helpful. Also MSA Trust website is a good start to learn more about living with MSA . If you suffer from Orthostatic Hypotension be aware that a lot of medication can lower your blood pressure dramatically x
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