My brother's research has uncovered that modern articles are now linking MSA and PD to changes in gut microbiome (caused by external toxins, diet, antibiotics, PPI's etc), leading to food sensitivities and enteric oxidative stress.
Here are 2 recent articles that you should bring to the attention of your neurologist.
At the moment, it appears that neurologists dont know about the gut microbiome, and gastroenterologists dont know about gut synucleinopathies causing atrophy to the brainstem (via the vagus nerve).
Good luck!
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Juliehabib
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I agree . My brother has done a lot of research on this over the past 12 months and the gut is involved in the possibly cause of this disease . I will keep you all posted on our findings as we share these with my other brothers ( who has MSA ) professor. It seems there is new hope coming to light about this disease and from what he has learnt so far from the research is that this disease starts in the gut and travels to the brain via the vagus nerve . Not the other way around !
Not wishing to rain on your parade, but these research areas have been “promising developments” since my husband was diagnosed in 2014. Like your brother, and countless others affected by MSA, I put in many hours of trawling the internet in search of reasons to be hopeful. I think neurologists are aware of the gut-vagus-brain/blood-brain barrier research topics (some of them are actively involved in it, after all). It just hasn’t yet been converted into a definitive biomarker that will enable earlier diagnosis.
It’s important to note that the line of research is aimed at finding a reliable test to confirm the condition, rather than therapy for MSA.
The only thing I know about transglutaminase is that its use in food products was banned by the EU about a decade ago. I understand the US FDA still deem it “safe”. I’m not a scientist, though!
I agree . FMT is a treatment that has been trialed on patients with bowel gut issues and it unintentionally cured their PD or MS the disease in these particular patients . Watch The Gut movie on Netflix / or Amazon prime the trial is in there which is very interesting . My brother has been on liquid Curcumin , probiotics ( combination of different ones ) and gluten free for 6 months now . When we looked back at his medical records it all started with gut issues , reflux , h pylori. So with the research indicates that this could well be a gut issue gone bad that yes gets in the blood stream via the damaged stomach lining caused by toxins , foods , medications etc .
For the avoidance of doubt, we are eternally grateful to the medical researchers who have committed their time/resource to establishing a cause and effect of synucleiinopathies. Without this, we would be completely in the dark.
This said, our experience is that 'on the ground' GP's, neurologists and gastroenterologists are not coordinated in their approach of what is now, in some cases, overwhemingly a gut/brain issue... regardless of which way round it starts.
On being given the MSA diagnosis we were left in the dark and simply told that no one knows what causes it. Whilst this is technically true, this left us devastated and without hope.
We would not want any other family to feel this way knowing that modern research is starting to clarify the power of microbiome in neurodegeneration... combined with a growing number of FMT studies (for gut issues) unintentionally reversing synucleinopathy in PD and MS!
By sharing experiences we can hopefully help medical professionals bridge temporal and spacial knowledge gaps whilst at the same time helping us laypersons to rationalise synucleinopathy diseases.
My brother has MSA and was diagnosed last year . He suffered with dizziness everyday , stiff joints , bowel constipation , Loss of balance and speech and walking difficulties . He was prescribed clonazepam to sleep and this made him more dizzy the next day . He also tested positive for TG6 gluten sensitivity .
He has been off all medication for 6 months , he follows a strict gluten free diet as requested by his medical practitioners . He takes probiotics and Curcumin soluble liquid and eats mainly plant based foods .
His dizziness went away , his bowels returned to normal , his still joints returned to normal .
It is just his speech and walking now which are improving and his physio signed him off yesterday and said his improvements are not what they see . He is not following the typical MSA route . He doesn’t not fit the norm was his physios words .
He does intense physio 3 times a week including speech . He can feel his hip slightly now and he can rotate his feet and legs which he could not do at all last year . He is stronger and landing his feet better more controlled .
When he was in the meds they prescribed him he couldn’t do any of this and felt fatigued and dizzy daily .
We have done a lot of research that links this disease to the gut / vagus nerve / brain . So we have focused on healing his gut and these improvements are what we are seeing .
More promising evidence linking MSA pathophysiology to gut/autoimmune/microbiome. (3 articles).
After being diagnosed with an aggressive form of MSAc in Jan20, our brother's ataxia nurse now believes his disease is taking a milder route!
Other than physio, the only thing he's done is changed his diet to more plant based, stopped eating gluten (because his serology test showed he was gluten sensitive) and takes a probiotic drink (Biomel and Kefir Yogurts) + curcumin (Truth Origins) daily.
Re meds, since stopping Clonazepam his BP is stronger and his acid reflux has now dramatically improved after stopping Omeprazole/gluten.
Modern studies are really starting to evidence the power of gut problems in synucleinopathy/autoimmune disease.
We are not out of the woods yet but it is uplifting to hear my brothers physio nurse says she does not see these positive changes in MSA patients!!
These positive observations were observed by 2 different nurses.
We are convinced that this is a peripheral gut disease, causing enteric/peripheral nerve damage that ends up in the brain over many years of progressive gut dysbiosis.
Hope you find our brothers improvements uplifting... there maybe hope after all 🤞🙏
P.s. Please ask your nurse for approval before taking any supplements or deciding to stop any medications. We knew of the risks but thankfully the changes appear to be positive in our brothers case.
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