MSA / Cerebellar atrophy

[Poss]

Hi,

I am Asian, male and 68 years old. I’ve been diagnosed with MSA.

I read the post by Sunvox on thiamine supplements. Wonder if the same would be indicated for MSA.

My neurologist is conventional and says that there has not been any convincing studies linking thiamine therapy with MSA treatment.

What are the views out there?

[MBAnderson]

They share lots of symptoms. If it were me, I'd figure there's no reason not to try.

[enjoysalud]

I agree with MBAnderson................there can be NO harm in trying, especially if newly DX. Since there is NO cure for MSA, and the thiamine is relatively harmless, I would try it.

[Hidden]

Poss,

Let's be real, you are talking about a very, very serious neurological disease with an outcome that nobody is going to be jealous of. Does your neurologist have something to offer that is going to alter the natural course of MSA? Sometimes you have to think outside of the box and do that for yourself. Many neurologists are strictly limited to whatever the pharmaceutical industry has to offer and there isn't a ton available for MSA and none of it is going to slow or alter the disease course. You will need to be your own best advocate! Given the nature of MSA, waiting for studies may prove counter productive as time is of the essence!

Given the very good safety profile of HDT and the very serious and often times fast moving nature of MSA, I would certainly give HDT consideration and I wouldn't let any moss grow under my feet before contacting Dr. Costantini to see if it is something you can consider! The best results he has seen in MSA was in patients who are of relatively new diagnoses when starting HDT. When I asked him about it, this was his reply in question and answer #56 in the following link :

healthunlocked.com/parkinso...

If you want more of your questions answered regarding HDT, the following link will tell almost all that we currently know on this forum and will answer most if not all of your questions :

healthunlocked.com/parkinso...

Good luck and please keep us posted!

Art

[Astra7]

I’d try everything within reason. Start low and build up the dose just in case you don’t react well. Give it at least 3 months.

Fingers crossed it works for you!!

[Rhyothemis]

The cerebellum seems particularly vulnerable to thiamine deficiency, as dry beriberi can cause ataxia. Also, thiamine has been used as a treatment for Friedreich ataxia:

ncbi.nlm.nih.gov/pubmed/274...

Since MSA has features of both PD and ataxia, thiamine supplementation would seem a reasonable thing to consider.

You may also want to look into CoQ10 or its derivative MitoQ. CoQ10 does not seem to provide much benefit in PD (and why that is is a really good question that appears to have no answer at this time). However, I have seen an anecdotal report that CoQ10 relieved orthostatic hypotension in someone with MSA. MitoQ did the same for me, though I don't have a diagnosis and perhaps my bouts of orthostatic hypotension were due to some other cause.

~~~

Edit:

So I tried to find the original anecdotal report and did a search on Google and found something even better - a published report of a pilot study on CoQ10 & orthostatic hypotension in MSA and other conditions:

researchgate.net/publicatio...

[pdpatient]

Poss. Are you 59 years old or 68? You have indicated both in your posts.