multiple system atrophy

[Littlerody]

Has Anyone researched this topic? I did and find I may fit into this category. Will check with my neurologist on Wednesday. This may be why he feels he cannot help me. Just curious. Judy

[silvestrov]

I know less about MSA than PD, but have studied the differences between them and have read magnesium concentrations are different in MSA brain matter than those with Parkinson's disease. The information I am posting should be forwarded to your doctor to see if this test is available. The following quotation is from a (long and boring) book about magnesium in the central nervous system:

"A reduced cytosolic [Mg2+] has been found also in the occipital lobes of patients with different types of cluster headache, showing among migraine patients a trend in keeping with the severity of clinical phenotype. In addition, the assessment of phosphorous magnetic resonance spectroscopy of brain [Mg2+] can help in the differential diagnosis of Multi System Atrophy and Parkinson's disease, offering a new diagnostic tool that may help differentiate neurodegenerative disease sharing common clinical features."

adelaide.edu.au/press/title...

Here is the study and difference in magnesium levels:

ncbi.nlm.nih.gov/pubmed/103...

I am a huge magnesium advocate but this book almost bored me to tears - long, dry and technical. Keep it in mind for bedtime reading. Ugh!

Here is a prior HealthUnlocked thread about someone had MSA and their experiences:

healthunlocked.com/parkinso...

Have to go here and best wishes.

Rich

[Littlerody in reply to silvestrov]

Thank you for the info. Always helpful. I stumbled on the website for mas looking for something else. The dietician has me taking magnesium for constipation. I see her tomorrow after 2 weeks of hell. The detox she put me on was a piece of cake compared to the tests I went thru to find out I had stomach and esophagus inflammation so bad it was what was causing all my pain. I took less than a week of dexilant 60mg and the severe pain was gone. I'm not sure if it was that which has been causing the autonomic nervous system to be acting up or just progression of the pd. Anyway I see my neurologist on wed and plan on picking his brain. Your a great resource. Judy

[silvestrov in reply to Littlerody]

It is my pleasure to help out. I know I may be jumping the gun but with these searches, but I have found that the best way to search a new topic is by including ncbi in the search. NCBI is the 'National Center for Biotechnology Information' and if there have been any scientific studies on the particular words you searched, they will come up. I searched 'herbs ncbi multiple system atrophy' and here are some of the results:

Dietary herb extract dai-kenchu-to ameliorates constipation in parkinsonian patients (Parkinson's disease and multiple system atrophy).

There is no additional information for this Japanese study but at least there is an extract which can relieve constipation in MSA patients:

ncbi.nlm.nih.gov/pubmed/155...

[Clinical effect of Yisui decoction plus western medicine in treating multiple system atrophy].

"The research results show that Yisui decoction plus western medicine has a certain effect on improving clinical symptoms of multiple system atrophy patients, especially has a significant effect on orthostatic hypotension, and can maintain a stable clinical effect in a certain period of time."

ncbi.nlm.nih.gov/pubmed/254...

Safety and tolerability of growth hormone therapy in multiple system atrophy: a double-blind, placebo-controlled study.

"In conclusion, r-hGH administration in MSA patients for up to 1 year appears safe and might influence disease symptoms, signs and, possibly, progression. The results support further studies utilizing higher doses in more patients."

ncbi.nlm.nih.gov/pubmed/174...

"vitamins NCBI multiple system atrophy" search:

Plasma Homocysteine, Vitamin B12 and Folate Levels in Multiple System Atrophy: A Case-Control Study.

"CONCLUSION:

Our data suggest that higher levels of Hcy may be associated with an increased risk for MSA.

"

The strange part of this study is B12 and folate levels were not different in MSA patients than controls. PD patients also have higher homocysteine levels.

ncbi.nlm.nih.gov/pubmed/262...

Coenzyme Q10 Levels Are Decreased in the Cerebellum of Multiple-System Atrophy Patients

journals.plos.org/plosone/a...

Analysis of COQ2 gene in multiple system atrophy

"Recently, recessive mutations of the COQ2 gene have been identified in two unrelated Japanese families with multiple system atrophy (MSA)."

researchgate.net/publicatio...

It really did not take me long to find these results - about 1/2 hour including the writing. Who knows what else is out there?

Rich

[Littlerody in reply to silvestrov]

Great info thank you. Do you charge by the hour lol. But there really isn't any pharmetceuticals for msa?

[silvestrov in reply to Littlerody]

I can't really say there are or are not pharmaceuticals for MSA. I get the impression that they are looking into options at the moment and have yet to decide on them. I know that rifampicin failed in a MSA trial:

Efficacy and safety of rifampicin for multiple system atrophy: a randomised, double-blind, placebo-controlled trial

thelancet.com/journals/lane...

Here is a link to MSA Medication Summary:

emedicine.medscape.com/arti...

[silvestrov]

I dug a little deeper and found a couple of possible therapies for MSA.

Uric acid is associated with the prevalence but not disease progression of multiple system atrophy in Chinese population

link.springer.com/article/1...

Uric acid as a potential disease modifier in patients with multiple system atrophy.

ncbi.nlm.nih.gov/pubmed/215...

swansonvitamins.com/swanson...

Progression Rate of MSA Under EGCG Supplementation as Anti-Aggregation-Approach (PROMESA)

"These data provide a solid rationale for testing in a clinical trial if supplementation of EGCG can interfere with the core disease mechanism in MSA and consequently retard the clinical progression of the MSA-related disability.

"

"Treatment with 800 mg - 1200 mg EGCG as putative neuroprotective agent."

"All of which have shown good tolerability and safety with the applied doses of EGCG of up to 1200 mg per day, demonstrating the safety of the drug under controlled clinical conditions (see 5.3.1 for hepatotoxicity in uncontrolled conditions)."

clinicaltrials.gov/ct2/show...

Also, on the MSA Coalition webpage they note:

"Eat high-omega-3, cold water fish 2 to 3 times per week or supplement with omega-3 fatty acids."

multiplesystematrophy.org/a...

On the webpage, "Current Concepts in the Treatment of Multiple System Atrophy':

"N-acetylcysteine, which acts as a precursor to the antioxidant, glutathione, and modulates glutamatergic, neurotrophic, and inflammatory pathways, might also be effective for this indication according to recent data."

movementdisorders.org/MDS/J...

It is fortunate I know someone who has experimented with EGCG in combination with salmon oil and vitamin C to enhance absorption.

Fortunately, NAC and omega 3 are hepatoprotective when using EGCG in high dose and purity. I take 800-900 mg/day with no consequences.

It is good to have therapeutic options and the following brand is the type of EGCG they are using:

taiyointernational.com/prod...

It just so happens they produce the Teavigo® brand which is available from Swanson:

swansonvitamins.com/swanson...

Rich

[siobhan-lewis in reply to silvestrov]

Hi Silestrov, my wife also has msa ,was diagnosed in June this year,I have been trying every thing I can to slow down or stop the progression of this awful disease,but not succeeding.you said that you know someone who tried egcg supplements, I also tried this for last 6 months with no benefit.Maybe I'm using the wrong brand ,it's from Supersmart and its Sunphenon and 1200 mg/day.Still waiting on recent trial results,just wondering if you have any more information about egcg since this post. Thanks Peter.

[silvestrov in reply to siobhan-lewis]

I tried posting this information twice and am having problems with my server so I have to keep this short and get to the point:

Rather than EGCG I recommend baicalin from S. baicalensis/lateriflora and fucoidan from brown seaweed/kelp.

S. baicalensis.lateriflora:

A Medicinal Herb Scutellaria lateriflora Inhibits PrP Replication in vitro and Delays the Onset of Prion Disease in Mice

ncbi.nlm.nih.gov/pmc/articl...

Prophylactic Effect of Dietary Seaweed Fucoidan against Enteral Prion Infection▿

aac.asm.org/content/51/6/22...

Baicalin, by weight (10-14%), is the major component of S. baicalensis/lateriflora and in the body it is converted into baicalein which immediately passes the blood brain barrier thus entering the brain and central nervous system. The supplement I recommend is:

liftmode.com/baicalin-powde...

Baicalin is also an anti-anxiety agent so I would take the first 250 mg scoop 1 hour before bedtime because it promotes sleep and baicalin has been shown to have analgesic effect similar to ibuprofen.

The bottle recommends multiple scoops but first find out if your wife reacts well to this bitter brew - it is bitter. If ok the second scoop should be taken 12 hours later.

Baicalin can cause liver impairment so taking Milk thistle/silymarin is highly recommended (and a must). MT has been used for liver ailments for thousands of years.

Liver damage: ncbi.nlm.nih.gov/pubmed/227...

Milk thistle: jpma.org.pk/full_article_te...

Because I am a broke artist I have to choose the least expensive (but still effective) supplement so I chose baicalin because it is affordable.

The following company claims to have the best fucoidan product and and after looking at the ingredients I would try it:

fucoidanforce.com/

Fucoidan is coupled with ganoderma lucidum, a medicinal mushroom, which is considered a superfood and though your wife does not have PD, it has been shown to be effective in PD models:

ganodermatown.com/Ganoderma...

Best wishes.

Rich

[siobhan-lewis in reply to silvestrov]

Hi Rich, thanks very much for this great information I'll try this out and I'll let you know how we get on.Thanks again Peter

[silvestrov in reply to siobhan-lewis]

PS. Dont take either vitamin C or N acetyl cysteine (NAC) with baicalin. Both C and NAC are reducing agents which will oxidize baicalin.

Though the number of substances which degrade prions are few, I will keep my eyes open for others.

[tata86 in reply to silvestrov]

So appreciate..

[Littlerody]

I hope my dr has some insight. He is one of the best movement disorder specialist around here. Thank you again. I have trouble taking too many pills. I think it was due to the acid inflammation. I'm hoping he can give me some confidence. Be well. Judy

[Pete-1]

MSA is one of the diseases that come under the heading "Parkinsonism". The ordinary ideopathic PD is preferable. One possible sign of MSA is a zero or minimal response to Levodopa.

[Littlerody in reply to Pete-1]

Thank you. I do respond most of the time so hopefully it is not. I sure have other symptoms though. Judy

[Hikoi in reply to Littlerody]

MSA - multiple systems atrophy, is also called a Parkinsons Plus syndrome so it has Parkinson symptoms and is one of the diseases it is difficult to diagnose straight off. When people talk about PD being misdiagnosed ths is one reason, MSA rather than PD. Hope you don't have it.

[Littlerody in reply to Hikoi]

Thank you I felt the same. My dr confirmed today I don't have it. I do have gastroparesis though. He said one of the clinical trials I did a couple of years ago for him that I actually was able to complete is available to me now. It's a drug they use in Japan. Caffeine oriented so I want to make sure my stomach is healed first. Do you know of it? I don't remember the name of it. But it won't be available here in the states for a couple of years. He said it's looking like it helps the gi tract. So we'll see. I'm still she'll shot from all the stress and tests. Be well. Judy