[rickanderson1942]

MULTIPLE SYSTEM ATROPHY

I am a 70 years old male. I have recently [May 7, 2013] been diagnosed with Multiple System Atrophy [MSA].

My incredible discovery is there exists only palliative treatment of MSA symptoms [syndrome]: speech and physical therapy, swallow tests, postural balance, et cetera. MSA symptom clusters are treated, not the degenerative disease itself.

Perhaps that is due to the rarity of MSA; only 2-3 mostly seniors develop it out of 100,000 people.

Are you one of the progressive investigators who are trying to correct that approach? I'd like to find a neurologist who thinks "out of the box" and is willing to prescribe drugs for a personal clinical test.

I live in northern Virginia, near Washington, DC, although I do not need to be near the medical provider.

I have a good general physician Dr. Sandra Ratterman near me at Inova Fair Oaks

I will travel to your first medical examination.

I have been researching clinical trials and FDA-approved, off-label, "compassionate use" drugs that attack the disease itself and synuclein buildup, including:
- minocycline
- rasagiline mesylate
- rifampicin
- terazosin [Diana Perez, PhD, at the Cleveland Clinic]
- nilotinib and bosutinib [Dr. Moussa, Georgetown University School of Medicine]
- fluoxetine (aka by the tradename Prozac)

I also have researched:
- autologous bone marrow-derived mesenchymal stem cell MSA therapy
- intravenous immunoglobulin [Dr. Peter Novak, University of Massachusetts Medical School]
U Mass]

Email me if you are interested in guiding my return to strenuous bicycling and exercise.

Thanks!

Rick Anderson


**



TECHNICAL DATA

MSA is a progressive, fatal disorder characterized by autonomic failure and parkinsonism and/or cerebellar involvement. Neuropathologically, MSA is characterized by glial cytoplasmic inclusions (GCI) of abnormally aggregated α-synuclein (α-syn).

MSA SYMPTOMS reflect the dysfunction and eventual loss of nerve cells in several different areas in the brain and spinal cord that control the autonomic nervous system and coordinate muscle movements. The loss of nerve cells may be due to the buildup of a protein called alpha-synuclein in the cells that produce dopamine, a neurotransmitter that relays motor commands in the brain. The buildup also occurs in other cells called oligodendroglia, which help transmit nerve signals. MSA, along with Parkinson’s disease and some other neurodegenerative conditions, are called SYNUCLEINOPATHIES because they share a buildup of alpha-synuclein in brain cells.

MSA differs from Parkinson’s disease and other synucleinopathies in that the troublesome protein aggregates appear predominantly in OLIGODENDROCYTES rather than neurons.

The formation of α-synuclein fibrils and disaggregate fibrils already formed will delay progression or reverse neurologic and autonomic functions and symptoms in MSA. This approach has been proposed as a potential approach to treat parkinsonism and, specifically, MSA.

[eva5667faliure]

good luck on your journey


someone that cares

[MelodyL]

Hi there.

My goodness you certainly are informed about what you have. I can only welcome you here and hope that someone comes along and answers your post. I certainly do wish you well.

I am praying for your road to recovery. Keep fighting and keep looking for answers.

Melody

[heb1212]

Mr. Anderson... I notice you live near Bethesda Maryland. Given how versed you are in your most difficult diagnosis, you may have already considered the National Institute of Health? It's right in your backyard. Truly, I wish you the best as you search for treatment.

Originally Posted by rickanderson1942

MULTIPLE SYSTEM ATROPHY

I am a 70 years old male. I have recently [May 7, 2013] been diagnosed with Multiple System Atrophy [MSA].

My incredible discovery is there exists only palliative treatment of MSA symptoms [syndrome]: speech and physical therapy, swallow tests, postural balance, et cetera. MSA symptom clusters are treated, not the degenerative disease itself.

Perhaps that is due to the rarity of MSA; only 2-3 mostly seniors develop it out of 100,000 people.

Are you one of the progressive investigators who are trying to correct that approach? I'd like to find a neurologist who thinks "out of the box" and is willing to prescribe drugs for a personal clinical test.

I live in northern Virginia, near Washington, DC, although I do not need to be near the medical provider.

I have a good general physician Dr. Sandra Ratterman near me at Inova Fair Oaks

I will travel to your first medical examination.

I have been researching clinical trials and FDA-approved, off-label, "compassionate use" drugs that attack the disease itself and synuclein buildup, including:
- minocycline
- rasagiline mesylate
- rifampicin
- terazosin [Diana Perez, PhD, at the Cleveland Clinic]
- nilotinib and bosutinib [Dr. Moussa, Georgetown University School of Medicine]
- fluoxetine (aka by the tradename Prozac)

I also have researched:
- autologous bone marrow-derived mesenchymal stem cell MSA therapy
- intravenous immunoglobulin [Dr. Peter Novak, University of Massachusetts Medical School]
U Mass]

Email me if you are interested in guiding my return to strenuous bicycling and exercise.

Thanks!

Rick Anderson


**



TECHNICAL DATA

MSA is a progressive, fatal disorder characterized by autonomic failure and parkinsonism and/or cerebellar involvement. Neuropathologically, MSA is characterized by glial cytoplasmic inclusions (GCI) of abnormally aggregated α-synuclein (α-syn).

MSA SYMPTOMS reflect the dysfunction and eventual loss of nerve cells in several different areas in the brain and spinal cord that control the autonomic nervous system and coordinate muscle movements. The loss of nerve cells may be due to the buildup of a protein called alpha-synuclein in the cells that produce dopamine, a neurotransmitter that relays motor commands in the brain. The buildup also occurs in other cells called oligodendroglia, which help transmit nerve signals. MSA, along with Parkinson’s disease and some other neurodegenerative conditions, are called SYNUCLEINOPATHIES because they share a buildup of alpha-synuclein in brain cells.

MSA differs from Parkinson’s disease and other synucleinopathies in that the troublesome protein aggregates appear predominantly in OLIGODENDROCYTES rather than neurons.

The formation of α-synuclein fibrils and disaggregate fibrils already formed will delay progression or reverse neurologic and autonomic functions and symptoms in MSA. This approach has been proposed as a potential approach to treat parkinsonism and, specifically, MSA.

[MelodyL]

Sir, do you happen to know your B-12 level? The reason I ask is that all your symptoms can be caused by a B-12 deficiency.

Mrs. D has a youtube video link on just that subject. There is a man in the video who was diagnosed with MSA and it turned out he had a SEVERE Vitamin B-12 deficiency.

I'll go and get that link and post it on this thread.

Melody

[MelodyL]

Sir:

Here is the link to that youtube video that Mrs. D included in one of her responses to another poster. You will find this very interesting and I do hope it can be of some help to you.

Here you go

http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

Melody

[pbower]

Hi Rick, Your story sounds familiar so I believe you and I have already been in contact. Are you taking CoQ10 and other anti-oxidants? The root cause of MSA has not yet been determined. The drug trials completed to date have all failed to show a difference in this disease progression. No other neurodegenerative disorder has a treatment as yet either. Only Parkinson's has dopamine replacement therapy. We need much more research into neurodegenerative brain diseases.

Best regards,
Pam
Board of Directors, Multiple System Atrophy Coalition
*edit*

[Darlene]

Pam,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene