RichGotsPots

Opps my graph did not translate well here lol

Fiber types Type Erlanger-Gasser Classification Diameter Myelin[14] Conduction velocity preganglionic fibers B 1-5 µm Yes 3–15 m/s postganglionic fibers C 0.2-1.5 µm No 0.5-2.0 m/s

Hi Everyone, Glad most of you agree with my theory over time I will develope it even more dig deeper and deeper. There are a lot of ways that small fibers become injured, each and everyone correlated to list on dinet for causes it would take me way to long to go down the list and explain them all, but they are all inclusive. Whether physical injury or inflammatory or hormonal assaults. The injury is happenning from many angles so a one fits all solution can not be reached by going after the causes. The key as I see it is either a protection. For example we all need to drive but to minimize risk we have sealbelts and airbags in our cars. So if we could protect the nerves protective cell walls or myelin depending on which type Group B or C, then we wouldn't have to worry so much about the injury. The other avenue is called Regeneration. There is 2 parts to Regeneration. The 1st part is the natural course of rgeneration of nerves. Just like when we get cuts our body has the ability to regenerate and heal. On cause of Dysmyemilantion could be that our injured nerves are not healing correctly. Schwann cells emit growth factors that attract new axonal sprouts growing from the proximal stump after complete degeneration of the injured distal stump. This leads to possible reinnervation of the target cell or organ. However, the reinnervation is not necessarily perfect, as possible misleading occurs during reinnervation of the proximal axons to target cells. So possibly medicines need to correct this faulty natural process. The other possibility are medicines that add to the natural process. These include stem cells. But there are 3 leading pharma avenues currently the most promising one is NGF or Nerve Growth Factor meds. i have only just recently started down the avenue of what types of treatments are needed. It is very hard to say at this point and the top researchers in the world are pretty much stumped as well. The most promising research usually comes from Diabetes researchers since a number of those patients have all types of Neuropathy not just small fiber.. I will have new posts in the furture that will discuss some possible treatments. IVIG is said to contibute to a regrowth in small fiber cells as well. But the mechanism is unknown. Perhaps it acts a little like stem cells.

Issie, you are focusing on your own issues while I'm incorporating everyones issues into a bundle that unifies it. Not everyone has the same cause. For example: The causes of small fiber neuropathy are diverse, and in some cases, the neuropathy is the first manifestation of an underlying systemic disease. The most common cause is diabetes mellitus or glucose intolerance (Polydefkis and McArthur, 2005). Other causes include metabolic syndrome (Zhou et al, 2011), hypothyroidism (Devigli et al, 2008; Penza et al, 2009; Magri et al, 2010), Sjögren’s syndrome (Chai et al, 2005; Chai and Logigian 2010), lupus (Omdal et al, 2002; Goransson et al, 2006), scleroderma (Poncelet and Connolly, 2003), mixed connective tissue disease (Olney, 1998), sarcoid (Holtzman et al, 2005; Bakkers et al, 2010), vasculitis (Lacomis et al, 1997; Zafrir et al, 2004; Lee et al, 2005), inflammatory bowel disease (Gondim et al, 2005), psoriasis (Narayanaswami et al, 2007), unspecified inflammatory conditions (Dabby et al, 2006), Guillain-Barre syndrome (Seneviratne and Gunasekera, 2002), nutritional deficiencies such as B12 deficiency, celiac disease (Brannagan et al, 2005), Lyme disease, HIV-1 infection (polydifkis et al, 2002), Hepatitis C infection (Tembl et al 1999), Fabry disease including in female carriers (Dutsch et al, 2003; Torvin Moller et al, 2009; Liquori et al, 2010), amyloid, alcohol abuse (Zambelis et al, 2005), neurotoxic drugs including statins (Lo et al, 2003), toxins (Kuo et al, 2005), or vaccinations (Souayah et al, 2009). These all are not unified attacks they aren't all immune attack. Alcohol abuse is not an immune attack. Yes maybe they mostly have to do with inflammation but that is so general it helps no one to focus on it.

Thanks Lemon it could be the original signal message as well but why I think it's not likely is because of where the damage comes from. It's from almost every direction except the brain. Also there is pretty big evidence already of the small fiber neuropathy in group C...

If there is no visual rash its a good chance its small fiber sensory neuropathy itching..

Issie if you think that you didn't read my theory careful enough. For example you say "The body is attacking itself and CAUSING these issues." Again you are focusing on one type of cause and not seeing the point of my research at all. If the immune system is attacking the body, is it attacking your hair follicles and your hair follicles are causing your dysautonomia? I'm not talking about what is attacking, I'm talking about where. Plus it's a well established fact that not all injuries to fibers both large and small are only due to the immune system. Research if focused right now on developing treatments to protect the nerve fiber from damage and also to regenerate nerves faster. They are still far off. But that means if they can protect nerves from lets say an immune attack then it doesnt matter if it is attacked all day long. Think of a thick walled cable that protects the outside phone and cable wires from storms and harsh weather. Certainly I'm not suggesting to not calm the storm or the cause of the attack. The only point I'm making with my theory is where the damage is and where the focus of the repair should be.

Lemon, the vagus nerve is included in my theory. While focusing exclusively on the vague nerve does not tie in a majority of issue for the syndrome as a while. The Vague nerve is located in the autonomic ganglia which I said I would elaborate on in future posts. They completely relate to my theory and the vague nerve is not being discounted at all. I choose to focus here on the bigger picture. There is way more then just innervation of one system involved.

Hi Everyone, I'm back with my 3rd Dysautonomia updated theory. I hope everyone will take the time to carefully read it over before they dismiss it or think they know aout it already. I will try to write in lay terms as much as possible. I have been researching Dysautonomia on my own without any formal medical or scientific background for just about the last year and a half. I'm well aware of just about every theory out there both in the medical/scientific community as well as on the forums by patients. You name it I've read about it please keep that in mind when you comment below. I don't dismiss any theory out there whatsoever, on the contrary I am tying most of them together. I believe all the theories thus far are mainly addressing symptoms rather than underlying causes. I'm speaking in general and prefer not to address any one particular theory so that I do not go off on a tangent or offend anyones set ideas. As stated this is pure theory and can only be confirmed by diligent clinical and laboratory research. - Dysmyelination of preganglionic fibers of the Autonomic Nervous System as well as other Small Fiber Autonomic Neuropathies- I think most of us know and understand that Dysautonomia is a syndrome or dysfunction of the Autonomic Nervous System (ANS) but really when it comes down to it we may know what all the possible symptoms are but we find it hard to get information about how this seemingly automatic system works. I won't bore you with the details but I do want to explain that the ANS is controlled by parts of the lower brain stem as one might expect. Although parts of the ANS for example are believed to operate in autonomy cut off from the control of the brain such as the gastro autonomic system. Also I am not going into detail of the sympathetic vs. parasympathetic system divisions the reason I hope will be apparent at my conclusion. There is a cascade of ways that the brain communicates with the various parts of the body. But the main way is through biochemical-like receptors that recept or receive messages sent from the brain and launch into action or inaction depending on the messages. Many chemicals are involved such as hormones like cortisol, testosterone or histamines/mast cells and inflammatory T cells or the most important are direct neurotransmitters like catecholamines or even nonadrenic neurotransmitters like GABA. Most theorist zero in on these chemicals to see if they are dysfunctioning and how or why. The next important detail in how the ANS works is how are those messages from the brain traveling to the receptors that are then acting. Again I won't go into too much detail except on the relevant details pertaining to the ANS. The brain sends electrical signals to the receptors it needs to send messages to via an ingenuously design network of fibers. You can think of it as a fiber optics network in the body. It really is very similar to how fiber optics sends data along glass tubes via light/laser. Again I'm purposely ignoring the great detail of how this happens to make it easier for the general reader here. If you want you can look it up in greater detail and/or msg me in private and I will explain it better. There are 3 types of Nerve Fibers used as signal conductors and are basically defined by diameter of the tube: Group A: Large fibers and for the most part send signals to the muscle and have nothing to do with the ANS. These large fibers are large diameter which allows for very fast signals to the muscle. These are mostly all Myelinated fibers (which I define below) Group B: Small Nerve fibers in this group are myelinated. Generally, they are the preganglionic fibers of the ANS and have much slower signal rates than Group A. Group C: Also Small fibers but these are unmyelinated and as the Group B fibers they also have a slower signal rate. These fibers include: Postganglionic fibers in the ANS Nerve fibers at the dorsal roots (IV fiber). Which tend to be sensory based Each Nerve Fiber generally has a Myelin Sheath and an Axon except in the case of unmyelinated ANS small fibers. Think of Myelin as the rubber insulation of an electrical wire and an axon as the actual metal conduction wire inside the rubber tube. So the two groups I have focused my attention to are Group B and Group C ANS Nerve fibers. I believe that both these groups are causing 60-80% of our Dysautonomia. The other percentage I believe have other things that mimic or act the same way compared to a true neuropathy. These people are just as ill but their illness is not a direct result of damage to the ANS per se. Meaning damage to the lower brainstem or ANS Nerve fibers. Again there are too many possibilities to list in this group such as B vitamin deficiencies. In Group B I believe that some of us have what is called Dysmyelination (deformed) as opposed to Demyelination (holes) of the complete myelin sheath. This means, in lay term, that the tubing is deformed but there are not any major holes in it, so the signal still goes through but its very distorted and thus dysfunctions. And that the type of distortion will determine the type of messages that are getting scrambled. Or even that the location of the deformed fiber determines which messages are being transmitter incorrectly. In some that means NE problems, in others it means Mast Cell problems, so in some sympathetic problems and in others parasympathetic problems. dysmyelination is a relatively recent discovery and there are many studies now into how it affect illness of usually mental origins. But those studies are not focused at all of AND dysmyelination at all so don't worry.. In Group C I believe the problem is not with the myelin because there are none in this group. The axons are protected with a special layer of cells instead. And I believe it is already proven that these fibers have been damaged in at least 50% or more of us. There is a simple skin biopsy that can determine with 88% sensitivity just how many fibers are destroyed comparing it to an average. I was found to have only 19% of these cells undamaged. I believe as time passes and more people get their small fibers tested for damage we will see an increase to 60%+ patients with documented small fiber damage. I believe the 50% number is mostly based on QSART testing which is only 55% sensitive for SFN. and even the skin biopsy test is only 88% sensitive . so some neuropathy is bounded to be overlooked.The question is how we get tested to the Group B Dysmyelination as well. I'm corresponding with a few top Peripheral Neuropathy scientists to help determine the best way to test for this. One possible answer may be with a special MRI test called an MRN the N stands for Nerves.. I'm simply amazed at the little number of people who have gone for a very simple, quick, almost painless skin biopsy to at least test Group C small fiber neuropathy.. Lastly the Peripheral Nervous system contains 2 types of Body Tissue (Muscle and Epithelial are the other ones not included). It contains Nerve tissue (obviously) and Connective Tissues. That's right connective tissue. That's why I believe that so many EDS ppl and autoimmune disease (connective tissue disease really) develop Dysautonomia eventually. If you google causes of SFN you will see almost every cause listed on Dinet for Dysautonomia. Keep in mind this is where I believe our syndrome is formed for the most part but think about it. If you have wires that are damaged and deformed and signal distortion it can affect the world around the, as well. It can affect different messages, different tissues, different chemicals. Its a cascade that I believe originated with both groups of small fibers. The cause of which are too broad for this post. There are a few details I'm leaving out for example about the autonomic ganglia nerves, which I believe to be a factor as well, and which I may elaborate on in the future. Hope you enjoyed this long post and I hope it leads to some answers some where down the line. I wish everyone good health! RICH

Itching is a very common sensory neuropathy symptom..

I'm going to make a new post and explain a lot about peripheral neuropathy, and my latest theory.. Bella once you get the results please update your poll votes if you answered it already. Thnx!

I'm appalled that more people have not had nerve skin biopies..

The problem with getting IVIG for CVID or PID is that the amount of IVIG is much lower per KG then other autoimmune diseases or CIDP. FDA Approved Uses The US Food and Drug Administration has approved the use of IVIG for the following 7 conditions: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Immune Thrombocytopenic Purpura (ITP) Primary Immunodeficiency states Secondary Immunodeficiency in Chronic Lymphocytic Leukemia Pediatric human immunodeficiency virus (HIV) infection Kawasaki disease Prevention of Graft vs. Host disease in an adult bone marrow transplant recipient The first four conditions account for 70% of IVIG use. Other Uses Given the broad action of IVIG, it can also be used to treat a variety of other conditions, in which controlled trials establishing the safety and efficacy are still needed. Some of these off-label uses are: Neurological diseases: Guillain - Barré syndrome, CIDP, myasthenia gravis, Lambert-Eaton myasthenic syndrome, multifocal motor neuropathy and multiple sclerosis. Dermatological diseases: Autoimmune blistering dermatoses, dermatomyositis, pemphigus, pemphigoid. Rheumatological diseases: Rheumatoid arthritis (adult and juvenile), systemic lupus erythematosus, systemic vasculitides, dermatomyositis, polymyositis, inclusion-body myositis and Wegeners granulomatosis. Hematological diseases: Aplastic anemia, pure red cell aplasia, diamond-blackfan anemia, autoimmune hemolytic anemia, hemolytic disease of the newborn, acquired factor VIII inhibitors, acquired von Willebrand disease, immunemediated neutropenia and neonatal alloimmune/ autoimmune thrombocytopenia. Infectious diseases: Acquired infectious disease that could be deleterious in low birth weight baby (ie, less than 1500 g), solid organ transplantation, extensive burns and HIV infection. Respiratory disease: Asthma. Miscellaneous: Acute idiopathic dysautonomia, acute disseminated encephalomyelitis, hemophagocytic syndrome, multiple myeloma and POEMS syndrome, recurrent pregnancy loss.

I though the Hopkins geneticist was a woman? So maybe is was Clair?

Just an update. Vanderbilt now includes this in their research on dysautonomia

I'm loving my Kitchen aid, it liquefies everything! So starting to make green smoothing a habit for dinner, less work then chewing lol I don't like mixing fruit and veggies, but I guess its okay if you like fruits in your salads. What I do to add flavor for green drinks is I used cucumber, a lot of cilantro, carrots, scallions and tomatoes. I find that the blended juice can be a bit foam and the Breville has a great cup to stop the foam when pouring so I use that sometimes..

Ruby, any progress report on your IVIG?

Matt really the list would be endless. First google causes of small fiber neuropathy. Then pick a cause and google IVIG treatment and the name of the illness. Here is a general study pointing to the benefits http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554132/

Yes! I suspect I have autoimmune or sarcoidosis which is also an immune mediated dysfunction.. Both are treated with IVIG. The trick is getting insurance to cover it..

Dont think you are weird that happens to me and I wonder if maybe the smell got trapped in my nose and I'm just smelling it internally lol

I got this. Really awesome chair that raises me above the counter like a bar stool except it has wheels i got it on Amazon for like $40

My Neuro is going to order IVIG, wont be east to get it my imsurance. But I'm still looking for autoimmune as the cause probably will get a lip biopsy also to rule out sjogren's and look for sarcoidosis

Hey Libby, really glad to see my fellow potsies getting healthy with their diet. You absolutely can't go wrong with that! I recommend juicing for breakfast, most greens. I found a the Breville Elite on sale with free shipping for $229 on Buy.com. It's originally $399 but on amazon for $299. It's a periodic sale and changes from day to day for you have to catch it.. I also own an Omega vert. omega is a slow single auger juicer. With that juice you can store it for 2 days in the frig but with the breville have to drink it fast. i also owned a green star twin juicer, juiceman and Jack la Lane. Don't ask lol. The green start by far gives the driest pulp and most juice for leafy green. breville is probably the best on carrots and fibrous things. I recommend juicing the starchy fibrous things that you dont like eating like carrots, peas, asparagus, apples, etc... And blending everything else. I especially recommend to mostly blend fruit because of the sugar content. The fiber makes it low GI index rated so wont spike your sugar as high. My Mom has the Vitamix and loves it. I was using a Cuisinart hand blender, which is awesome for soups. But now I bought Kitchen Aid on Overstock.com for $99 plus got 10% for being a first time customer. On any blender review kitchen aid gets high marks and is almost as good as Vitamixer. The only problem with Kitchen Aid is the Jars end up leaving after a year, but Overstock had insurance for $10 that cover everything for 2 years so. If it breaks at any time they give you a full credit to get a new one The other blenders I hear good things about are Blentec, it has not tamper to stick in the jar but the wildside jar blends even better than vitamix I hear and its as powerful. Some Oysters are highly rated and cheap. Waring xtreme is even more powerful than vitamix and blendtec and gets good ratings. And Omega 3HP gets pretty good ratings.. Not many people know about this appliance but every kitchen in India has an electronic stone wet grinder. Its like those stones they use to crush olives. You can make the creamiest nut butters in them and fluffy types of dough and rice. It can be used to grind almost anything.. Would take too long to make a smoothy though. Most ppl get the nutibullet for traveling with. It does ok though for home use too, not as smooth as a blendtec or Vita

Hey Hey, I've been hearing good things about a john's hopkins geneticist that might be worth a trip, probably be 3-4 hours max for u

I'm also curious, thanks for posting Rama