Have you tested positive for synucleinopathy?

Hello @sescorp0834 and welcome to Mayo Clinic Connect. It sounds like you have been through a very arduous journey to seek proper care.

You will notice that I have moved your post into the Parkinson's Group and also included it in the Neuropathy Group. It sounds to me like the Synucleinopathy symptoms and lack of conclusive diagnosis is your main concern, so the primary group you will see it listed in is Parkinson's.

I wanted to share with you that Mayo Clinic has a lab and doctors who are focused on this disease area. Here is some additional information if you'd like to learn more:
- YOUNG-ONSET PARKINSON'S DISEASE AND SYNUCLEINOPATHIES: RODOLFO SAVICA:
https://www.mayo.edu/research/labs/young-onset-parkinsons-disease-synucleinopathies/overview
Are you open to another opinion?

There's a paper that suggests that Desulfovibrio infection (with particular, unnamed species) may cause alpha-synuclienopathy. Search for "Desulfovibrio bacteria enhance alpha-synuclein aggregation in a Caenorhabditis elegans model of Parkinson’s disease"

There's a paper which lists the susceptibilities of Desulfovibrio to various antibiotics. Search for "Susceptibilities of 23 Desulfovibrio Isolates from Humans"

There's a paper which describes polyphenolic acids that cross the blood-brain-barrier and inhibit aggregation and ameliorate neurotoxicity. Search for "Anti-aggregation Effects of Phenolic Compounds on α-synuclein"

(I created an account just to respond to this post, and the system prevents new accounts from posting links.)

@mortalbird, thank you for creating an account to help others and to post evidence-based information.

You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam. Please allow me to post them for you.

- Desulfovibrio bacteria enhance alpha-synuclein aggregation in a Caenorhabditis elegans model of Parkinson’s disease https://www.frontiersin.org/articles/10.3389/fcimb.2023.1181315/full

- Susceptibilities of 23 Desulfovibrio Isolates from Humans https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2786338/
- Anti-aggregation Effects of Phenolic Compounds on α-synuclein https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7288075/

I am sad for this person. I try to focus on anti-inflammatory foods to help my brother who has MSA and is in a care center. A book that I read is entitled, “Hidden Fire: A Story of Inflammation, Diet and Disease” by Shilpa Ravella.

I am so sorry you are going through this. I know you are suffering and wish there were better answers. I was diagnosed with "SFN likely underpinning autonomic dysfunction, and diffuse muscle twitching and weakness" at Temple BSW. I have no more answers than that. I experienced the same response from UT Southwestern when I was referred to their neuromuscular clinic. I started to have difficulty swallowing in September and had a swallow study on the 30th. It sounds like your PCM is very helpful. Do you mind sharing? I just fired my 3rd one for the year when she said all my symptoms were "somatic, BH health in nature, with strong psychological overlay" despite the results from my neurologist. I am looking at trying to go to Stanford or Mayo, but I need a referral and a new PCM.

Hello @gpo and welcome to the Parkinson's (PD) support group on Mayo Connect. I'm sure you must be frustrated at the inability of your medical team to come up with some answers to help with the symptoms you are experiencing.

You mention, difficulty swallowing." What type of difficulty are you experiencing? Do you choke when you swallow or does food get stuck? Often, speech therapists can offer suggestions and exercises to help with swallowing problems. Speech therapists are really unsung heroes for individuals with neurological issues. Have you been referred for speech therapy?

Have any meds or physical therapy been offered to you for the other movement disorder symptoms?

YES, 100% I am open to ANY information that may lead to answers. So thank you for all of your input! I literally have never had ANYBODY even have a simple opinion. So I am grateful that you included me in both groups. I actually found a neurologist actually 10 minutes from my home. Central Texas Neurology, Dr. Peckham. The only problem is they only provide diagnostic help and NO TREATMENT OPTIONS or ANY OTHER OPTIONS. She is positive I have Pure Autonomic Failure (PAF), but we don't know if it is the type that will advance into Multi System Atrophy (MSA). MSA is terminal, but PAF just makes life suck. There are less than 5000 people in the entire country that have either. She told me that either way, rather I have PAF or MSA, I will get either Parkinson's or Dementia or Both. There's no way to know until it either happens or I'm in autopsy. So thank you for all the information and adding me to the 2nd group. If anybody ever has any questions or suggestions or just a hi, please feel free to do so.

Thank you for all of this awesome input. There are so few of us battling an invisible illness that's eating me alive from the inside out. I am grateful for your information and I most certainly will research everything you've said as well as present it to my doctor's and see if they have input as well. My main problem with any form of treatment, is there is nobody that has a single clue on what to do, due to how rare Pure Autonomic Failure let alone if it morphs into Multi System Atrophy. So any and ALL input is greatly appreciated and always followed up on. So thank you very much for all of your insights.

Thank you, all of you that post responses are awesome and VERY MUCH SO APPRECIATED. I have volunteered on every volunteer list I have ever found and I have never received a single response except you awesome people. So thank you for caring. I really don't have that in my life anymore. Just suffering, doctor's, pain management procedures, signal cord stimulators, more medications than any one person should have and to to it off, the only thing that helps the pain a tiny bit is opioid pain meds and the PAF or MSA has made me opioid resistant. I take the maximum allowable, at least in the state of Texas and they do help a tiny bit. But then again, stopping them for just 3 days will make me bed ridden. So thank you for all of the input. It is greatly appreciated and investigated and tried wherever I can.

I am sorry to hear about your brother. I'm not sure where you are in this world, but anybody that has any tough neurological issues, I recommend that Dr Elizabeth Peckham at Central Texas Neurology. They assign many specialist doctors to every patient. I had a 7 doctor team there. I also had a 7 doctor team at the Mayo Clinic, my lead doctor was Dr Kantarci (I think that's spelled correctly). They may only diagnose, but they also send you in the best direction in their opinion. I'm still going through doctors in this and have not made any advancements. But I'm meeting you people and learning more and learning more potentials for hopefully a brighter future. Thank you for your input. And tell your brother he is not alone. Just fight, fight through as much pain as he can. Fight for something, like I was still raising my teenage daughter at the time I originally posted here. Now my daughter is grown and out living with her boyfriend. It's amazing how being alone can be so difficult and I can afford you it's very lonely with feeding tubes, multiple implants in my spine, screws and plates in my spine and most recently my hand. Because I fell and got a tiny cut on my thumb and it just happen to cut my flexor tendon in half. They reattached it, but I have connective tissue disorders and my thumb would never work again. So they drove a large screw right down the tip of my thumb so the way down to connect both thumb bones into one permanent straight bone. I wish you and your brother all the best!