My Theory On What Is Causing Most Dysautonomia And Why There Are Wide Ranging Symptoms- Autonomic Neuropathy

[RichGotsPots]

So I was doing some reading and found an interesting study in patients with "idiopathic" sfn:

Gain of Function Na 1.7 Mutations in Idiopathic Small Fiber Neuropathy; Faber et al http://lib.bioinfo.pl/pmid/journal/Ann%20Neurol'>Ann Neurol. 2011 May 20;

Anyway the gist of this study was out of 28 patients, 8 (almost 30%) had cSNPs (coding mutations) in a sodium channel that is present in small fiber nerves. These mutations caused a hyper-excitability of neurons and they are hypothesizing that increased activity (i.e. more sodium coming through) may be causing some degeneration in the fibers. Apparently lots of sodium can be taxing on the neurons. 7 of 8 of the patients with these mutations had autonomic dysfunction and most had a younger than normal age of onset for the sfn and no other cause could be identified.

This is really interesting to me...I think I may do some experimenting on myself. A huge part of my job is analyzing human genomic DNA for mutations in the protein that our lab studies in relation to glaucoma. Well I have a ton of my own DNA in our lab's freezer because we all participated as "controls" in our current study. My boss has already told me he'd be fine with me sequencing proteins of interest to see if I can get to the bottom of some of my problems. I think I may check out to see if I could find anything out. We also do electrophysiological studies of proteins similar to those in this paper. I may even be able to do some functional testing of any potential mutations found to see if there are changes.

Nice find! Let me know how the DNA pans out.

[RichGotsPots]

The thing to keep in mind is that autonomic neuropathy has been healed in many patients by treating the underlying causes. Atomic specialist are rarely involved in the treatment of underlying causes except with a few exception. One example of major cause of Autonomic neuropathy is Diabetes. I posted the other day that Autonomic neuropathy actually got worse with an abrupt control of glucose but down the line/longterm autonomic neuropathy was healed in most of the patients with type 1 and a lot with type 2 that controlled their Glucose. The point I'm trying to make has nothing to do with glucose but rather that abrupt hormonal changes negatively affect neuropathy and that controlling a cause of neuropathy long enough to let the body heal itself seems to be key.

Most autonomic treatments are symptomatic, masking the real problem and not providing any real relief from the cause. So I hold that the key is protecting the fibers and creating a healing environment. That will be different for all of use because of the 100 of causes that we don't have in common.. Someone can be nauseous from a car ride and another could be nauseous from Chemotherapy but yet one medicine or ginger can help both causes. So these symptomatic meds are helping tons of people and they have a great purpose indeed, but more focus needs to be on neuro protection and regeneration.

[GypsySoulNicole]

In the meantime, Cinnamon may be worth a try. It's been used as medicine for centuries. It may also counter the neurotoxic factors released by activated glial cells in the brain. These toxins kill the myelin-producing oligodendrocyte cells.

A neurological scientist at Rush University was granted $750,000 from the NIH to see if cinnamon can stop the destructive inflammatory process of MS. Prior research by the Rush team showed sodium benzoate, a component of cinnamon, inhibited inflammatory molecules and blocked MS disease progression in mice.

I purchased organic bulk cinnamon from a local food coop and will start my own trial. Unfortunately, I am not eating sugar or grains or I would enjoy this self trial with cinnamon rolls!

http://www.rush.edu/webapps/MEDREL/servlet/NewsRelease?id=1503

http://link.springer.com/article/10.1007%2Fs11481-013-9447-7

[tinkerbella]

Thanks Nicole for those links. I used to use cinnamon for my BP, as it lowers it as well. I think I'll also give it another try now and just take a daily does. And see what happens too. : )

[issie]

Thanks Nicole, Good find. Since LDN wasn't something that worked out for me ---maybe cinnamon will be better.

Issie

[Angela]

hey, have note kept tabs on this post but cinnamon is super yummy with vanilla, tea and a little honey.

[GypsySoulNicole]

Just an fyi, all cinnamon isn't created equally. There are basically 2 types, Ceylon, which is true cinnamon and Cassia. I purchased organic Ceylon Cinnamon and plan on supplementing with 3 grams per day. Cassia cinnamon contains coumarin which can be hard on the liver, the recommended daily dosage is around 0.5-1.0 teaspoons (2.5-5.0 mL) per day. Ceylon cinnamon does not contain coumarin.

[RichGotsPots]

In the meantime, Cinnamon may be worth a try. It's been used as medicine for centuries. It may also counter the neurotoxic factors released by activated glial cells in the brain. These toxins kill the myelin-producing oligodendrocyte cells.

A neurological scientist at Rush University was granted $750,000 from the NIH to see if cinnamon can stop the destructive inflammatory process of MS. Prior research by the Rush team showed sodium benzoate, a component of cinnamon, inhibited inflammatory molecules and blocked MS disease progression in mice.

I purchased organic bulk cinnamon from a local food coop and will start my own trial. Unfortunately, I am not eating sugar or grains or I would enjoy this self trial with cinnamon rolls!

http://www.rush.edu/webapps/MEDREL/servlet/NewsRelease?id=1503'>http://www.rush.edu/webapps/MEDREL/servlet/NewsRelease?id=1503

http://link.springer.com/article/10.1007%2Fs11481-013-9447-7'>http://link.springer.com/article/10.1007%2Fs11481-013-9447-7

Keep in mind for the most part we are not concerned with myelin only somewhat in the group b fibers which are lightly myelinated. But the main focus first is the unmyelinated fibers. So if cinnamon helps myelin it wont help us. Unless it some how repairs what I theorizes are dysmyelination of the group B fibers but thats theory. The facts are that for sure most of use have Group C small fiber unmyelinated neuropathy.

[Lemons2lemonade]

Naomi, yes. Also learned iodine helps with myellination. Hello iodized salt.

[issie]

Found this tonight ---thought you'd like it Rich.

http://www.patient.co.uk/doctor/autonomic-neuropathy

Issie

[RichGotsPots]

Keep an eye out for a new post that will further elaborate on my theory, just more pieces, hopefully up by this week. Been really digging in. Also soon to follow that is mew potential tests for my theory and pots not general test but tests on small fibers..

[RichGotsPots]

@Issie that seems old information, to me. But any leep an eye out for my new posts. I'll try to include picturs to help everyone visualize.

Edited April 16, 2013 by corina

[GypsySoulNicole]

"Keep in mind for the most part we are not concerned with myelin only somewhat in the group b fibers which are lightly myelinated. But the main focus first is the unmyelinated fibers. So if cinnamon helps myelin it wont help us. Unless it some how repairs what I theorizes are dysmyelination of the group B fibers but thats theory. The facts are that for sure most of use have Group C small fiber unmyelinated neuropathy."

Rich, I've been thinking about the unmyelinated C Fibers for the past few weeks and thought maybe I found something to help. I posted a new topic under the title Earthing, I'm wondering if this could help with c fibers.

Here is one hypotheses not mentioned in my Earthing post with linked studies

http://www.ncbi.nlm.nih.gov/m/pubmed/21856083/?i=2&from=/22757749/related

[ShakeyTheOwl]

Issie, Great link!

Thank you for sharing.

[GypsySoulNicole]

"Keep in mind for the most part we are not concerned with myelin only somewhat in the group b fibers which are lightly myelinated. But the main focus first is the unmyelinated fibers. So if cinnamon helps myelin it wont help us. Unless it some how repairs what I theorizes are dysmyelination of the group B fibers but thats theory. The facts are that for sure most of use have Group C small fiber unmyelinated neuropathy."

Rich, I've been thinking about the unmyelinated C Fibers for the past few weeks and thought maybe I found something to help. I posted a new topic under the title Earthing, I'm wondering if this could help with c fibers.

Here is one hypotheses not mentioned in my Earthing post with linked studies

http://www.ncbi.nlm.nih.gov/m/pubmed/21856083/?i=2&from=/22757749/related

I posted this link on my Earthing topic, but I thought the thermographic images are interesting as to how this may help with peripheral neuropathy.

http://www.earthinginstitute.net/studies/thermographic_histories_2004.pdf

[JRC09]

Hello Rich,

I am not really new, but I have not spent much time on the site. I see how knowledgable you are, so I wanted to reach out to you. Maybe my story can help shed some light for us.

I am 27 years old, and was playing college football only 4 years ago. When I was 23 I came down with a pretty nasty flu. My first neuro symptom started with an eye lid twitch, by that evening I had full body twitching and internal tremors. The next morning I woke up with autonomic dysfunction, POTS, tonic pupils, frequent urination, etc.

A year went by, I thought this would all resolve, until a flare sent all my symptoms into haywire mode. I would flare and recover, and flare and recover but the symptoms never ceased. Here we are three years later and all I have to show for it are documented palpitations and small fiber neuropathy results. My doctors think everyhting is fine, but I feel like my body is under attack...from myself. Has any of your new research she any light on stopping the attack and repairing the nerves?