RichGotsPots

Acid of all kind stomach, esophagus, colon, etc... Can all be related to POTS, but doesnt have to be. There is a fair amount of ppl here with gastroparesis or colon inertia and they tend to get the most reflux. But reflux is a multibillion dollar business because almost everyone has it... Only time I had it was medicinally induced not from pots

To date one of the most effective and studied treatments of small fiber neuropathy, no matter what the cause, is IVIG treatment. Meds like Gabaprentin are used to manage symptoms of pain but not as a healing treatment like IVIG is. There are a few others that have had success but they mostly vary depending on the cause. IVIG seems to work across the board. Knowing the cause helps physicians better decide how much IVIG to start with. condition like CIDP require IVIG every 2 weeks, while most other condition start off every 3-4 weeks.. From all the research I've read about it, so far, the key is finding a baseline to measure the treatment against. My Neuro is going to use valsalva and thermo testing and test me after every 3 months of treatment. I know of some ppl who get skin biopies every 6 months for a baseline. I've also read that once you are on an IVIG med that agrees with your body (not all are created equal there are many brands and variations within brands) then there should be some decent improvement by the 3rd month already..

Also there is over lap btwn large fiber and small fiber but its not that obvious and most ppl dont have both..

Tingling could be a big sign for small fiber neuropathy. Issie, you said leg skin biopsy, which part of the leg did they take the skin from. The skin biopsy is about 88% sensitive my doc says it can only miss things if taken in the wrong spot (because they dont have an average baseline in every area of the body to measure against) or if the neuropathy isn't as bad at the moment. I have heard of the neuropathy healing some what from natural means so that might explain the flip flop in our symptoms. We might be healing temporarily and then something come along to slowly kill the nerves again..

http://chronicfatigue.about.com/b/2010/10/11/small-fiber-neuropathy-in-fibromyalgia-chronic-fatigue-syndrome.htm Many of you veteran dysautonomia people will have read and heard about the cross-over btwn dysautonomia, fibro and cfs. Well this article points to almost half of just the fibro and cfs group as having tested positve for small fiber neuropathy. "Researchers took skin biopsies from 30 people with fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, or a combination of these illnesses, as well as from a control group. Of the people with painful conditions, 13 (43%) had evidence of small fiber neuropathy." Interesting short read..

Try to get a skin biopsy mate, they say in the article its nearly 30% more sensative to picking it up. Before my dr. Gave me the skin biopsy he used a random cold metal dr instrament to test my perisheral temperature sensativity and found that I couldn't feel cold on my shin... I thought maybe it was from when I was young and thai boxed, because we train to deaden our shin nerves..

As many of you know I have been diagnosed with small fiber neuropathy (SFN). It's my belief that most of us have it, even though Mayo in a round about way states that around half of us have it. I won't go in the reason why I think more of us have it to save us time. I have just started looking into SFN and I came accross a really great study. First off the study mentions this about autonomic dysfunction in the neuropathy patients tested: "Autonomic signs and functional tests in SFN Clinical signs of autonomic dysfunction were present in 32 patients (47.8%) with SFN: 18 patients had hypo-anidrosis (lack of sweating), 12 patients had flushing or other vasomotor dysfunctions and two patients had Adie's pupils with post-ganglionic hypersensibility to 0.1% pilocarpine test. Laser Doppler flowmetry was abnormal in 51 patients (76.1%), whereas 16 patients (32.9%) showed abnormal temperature and basal cutaneous blood flow with inverted hand-foot gradient. Vasoconstriction reflexes to deep breathing at the foot were abnormal in 11 patients (16.4%) and veno-arteriolar reflex was abnormal in 18 patients (26.8%). Vasodilatation response to local heating was reduced in 42 patients (38.8%): in 26 patients at the foot, in 20 patients at the distal leg and one patient at the proximal thigh." Here is the rest of the study so you can see how much pain these patients have and the different types of pain they have too http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2442424/ I really think a ton of ppl who are diagnosed with fibromyalgia really have small fiber neuropathy causing their pain... The last amazing part is how they followed the patients for around 2 years after the study. Unknown idiopathic, became known causes in that time for many.. Some ppl start out with SFN and progress to large fiber neuropathy. It's all interesting and I encourage everyone to read this study.

Yes I have small fiber autonomic neuropathy so now I have a few doctors looking for the cause.

I've heard the vocal cord explanation before and it's possible, but I think its more likely a symptom and not the cause. The cause I believe is autonomic neuropathy in the lungs and endothelial cell tissue which in turn affect the brains control on breathing and may affect NO levels in the lungs and mitochondrial dysfunction in the lungs

Bella they are supposed to take at least two and sometimes a 3rd one. One on the foot, one on the ankle and some get a 3rd on the hip or shoulder

Thanks! I don't have a cramping feeling at the bottom of the rib cage. The pain is mostly towards my back now almost exactly behind my left should blade but slightly toward the center but not on the spine. I took my temperature at my worst on Friday and it was low. Under my tongue it was 95.1, under my left armpit it was 96 and under my right armpit it was 97... The weakness is what is mostly making my breathing worse. Last night I didnt get to sleep until 10am and woke up 5pm. It was a very light sleep because one of the neighbors is building something and banging all day. Still taking Protonix, and zantac...

Also never made it to the exercise pulmonary catheter testing. My guess is I loose blood pressure in my, lung, I dont gain it. Unless I have some kind of pressure from a hiatal hernia...

Mestinon didnt help at all

Started after I took a shower on Friday and then took a nap. I woke up with it. After the nap it got progressively worse. I don't have any indigestion with it at all so it doesn't feel like acid. But just as a preventative I stated taking Protonix (ppi), zantac and occasionally maalox (calcium carbonate w/ gas-x). I also made a slippery elm and Marshmellow root tea last night. It really making me weak and which in turn is making my breathing worse. It's not causing asthma at all, I'm sure. I stopped eating tomatoes and some other acidic foods.. I made split pea soup last night, ehich just made me a little gassy.. I also took Tylenol because the burning was just so uncomfortable I didnt get to sleep until 9am this morning... With all the meds still hasnt gotten much better, so I wanted to see if anyone had experience with this...?

I started thinking that some how it's related to food. When I just drink liquids like fresh vegetable juice I feel stronger and have less breathing issues. Then when I eat solids and go out or take a shower after I get breathing issues..

On facebook there is a Sjogren's and POTS group with almost 50 members. It makes me wonder if there aren't so many more ppl with autoimmune mediated POTS, but that after the blood antibodies come back negative they give up looking.. I have heard of ppl going to a big pots clinic and they don't find titers but still diagnose autoimmune and treat with IVIG.. Wish that clinic was closer :/

Thnx Issie! I haven't tried gastroCrom yet, i've known about for some time already though. But I kinda of ruled MCAS on the fact that I dont improve even all when I take Claritin, Zyrtec or allegra and not at all with zantac either. Someone I'm close to has major food allergies and I've seen close up what anaphylaxis looks like both mild and very bad. I don't have that type of reaction. What I do have are very usual allergies that don't necessarily show up on my allergy testing. For example when I was younger around 17 I had allergy testing and the dr said I'm allergic to myself. He didnt explain it and I cant find any online info about it. All I know is, if I sweat I can sneeze and I also become weak from it where I can throw out my back. Also I've always been allergic to newspaper, i think from the ink and not from mold, but not sure. And the strangest or worst one for me is I became allergic to dogs and maybe cats. I had a Dalmation growing up and I was fine but around 4 years after we had him I started getting allergic, but I just took Claritin and got a bedroom air filter and was fine. Then I had a cat for 10 years and he always slept in my bed and I was fine. Ever since I got sit I started getting a little allergic to him. And then 4 years ago when I visited friends with dogs I broke out in rashes and got allergic to their dog. Then 2 years ago I got an anaphylaxis attack of my own from someone dogs. My throat started to close up and I was wheezing and all that. That's nothing like my current pots breathing issue. I don't wheeze, my throat doesnt close up... If I do have MCAS Dr. Afrin would be needed to figure it out because the normal mcas meds won't work for me...

http://en.wikipedia.org/wiki/Triple_A_syndrome Characteristics Individuals affected by AAA have adrenal insufficiency/Addison's disease due to ACTH resistance, alacrima (absence of tear secretion), and achalasia (a failure of a ring of muscle fibers, such as a sphincter, to relax) of the lower esophageal sphincter at the cardia which delays food going to the stomach and causes dilation of the thoracic esophagus. There may also be signs of autonomic dysfunction with AAA, such as pupillary abnormalities, an abnormal reaction to intradermal histamine, abnormal sweating, orthostatic hypotension, and disturbances of the heart rate.[5] Hypoglycemia (low blood sugar) is often mentioned as an early sign.[4] The disorder has also been associated with mild mental retardation.[4]

Well, I just wrote this on another one of my posts, but when I was looking into sarcoidosis and small fiber neuropathy I came across a pretty good study by Cleveland Clinic. They found that there was a decent amount of sarcoidosis patients who had small fiber neuropathy so they decided to study just these patients. Two remarkable statements stand out to me in the study. #1 they said patients who had Sarcoidosis and SFN are resistant to prednisone treatment. Which is remarkable to me, because I 1st suspected Sarcoidosis after reading a story on Dinet's regular website about a girl who had breathing issues and pots and after a year finally saw Grubb and both her and Grubb figured it out and treated it with prednisone and the Sarcoidosis went into remission. I spoke with that girl. She still has POTS but its very livable now the Sarcoidosis is gone... So in the beginning I got tons of prednisone and it never did a thing. Maybe I have Sarcoidosis or maybe the same is true for autoimmune and SFN and prednisone treatment... #2 they said Sarcoidosis patients with SFN treated with IVIG had 33% chance of longterm symptom improvement that will be obvious by the 3rd treatment. Trust me I dont want any treatments and I also would rather do it naturally but my breathing issues are unbearable. Running low on options.

The lip biopsy is just the only 100% sensitive test for the above mentioned conditions. Blood testing like ANA are indicators and are usually less then 50% sensitive. I've spoken to about 50 ppl so far with autoimmune and Dysautonomia and ones who had the lip biopsy only about 20% had high ANA or other blood test indicators the other had no indicators yet the lip biopsies revealed without a doubt some of the conditions listed above. So personally the 2-3 week of lip discomfort is worth it to know for sure. The only way the lip biopsy is inaccurate is if the disease is in a very low stage, even though I dont think it has to be full blown or the sample is mishandled. Sometimes the oral surgeon misses a salivary gland completely... Treatment varies greatly for all the conditions mentioned above, but what I am finding is that most autoimmune condition can benefit from IVIG and even Sarcoidosis with SFN has a 33% improvement rate with IVIG according to Cleveland and sarcoidosis isnt even autoimmune. Something uncanny and obvious to me is that autoimmune and dysautonomia have almost the same % affect of woman vs. men. 80% of autoimmune disease affect woman.

I try to keep trucking. After 7 years it finally became severly limiting. And the only thing that keeps me goinf is hope. Not hope that other ppl can cope with it, but hope that ppl as bad off as me have found their primary cause. I don't think our syndrome is idiopathic, there is a direct pathology that links all of our primary causes. All these primary illness are doing damage, whether it's endothelial or small fiber neuropathy or some epigenetic change. I'm not sure the researchers will find it in the next 10 years even. But what I do know is that when I find someone in my condition, disabled for years and they find a pretty obvious primary cause and they start treating and attacking that cause, they find some relief, even if its not 100% because some damage is already done or not repairable with todays know how. That relief is my goal. Some other ppl are able to cope with treating the syndromes sysmptoms which I also have hope for but so far haven't had much luck with. But still I'm on the hunt for my primary cause and thats how I rationalize it all.

One of the issues is that the neuro is the one to order the skin biopsy but them the Rheumatologist is the one to order the lip biopsy. So I'm going to a top Rheumatologist this week who will most likely order the lip biopsy..

1st thing is that there are a bunch of different type of skin biopsies. for example there is an EDS skin biopsy or a mastosis skin biopsy and a bunch of others. The one I'm asking about is a small fiber neuropathy skin biopsy. This tests the sweat gland autonomic nerves. The main lab in the USA that does this skin biopsy is https://www.therapath.com/ The reason for the lip biopsy is to rule out a bunch of different autoimmune things that could cause SFN. Its the next logical test after blood work to check a bunch of causes like diabetes.. Lip biopsy (specifically the minor salivary glands of the lip) may also be used to assist in the diagnosis of Sjogren syndrome, a chronic autoimmune disorder involving the destruction of glandular tissue. The glandular tissues involved include both minor and major salivary glands and the lacrimal gland. Other systemic disorders, such as sarcoidosis, lupus, amyloid polyneuropathy, and neonatal hemochromatosis may be confirmed with a lip biopsy

Issie, from What some pll have said IVIG isnt just for immune deficiency things, it helps to rebuild nerve damage as well. Actually the amount they use to rebuild nerve is twice as high a dose as they would give for common variable immune deficiency for example. What the point of finding out out primary cause if we don't treat it with the best meds? I mean there is always the natural route but its a lot longer and harder. For example the raw vegan diet I'm on now and the daily wheat grass juice. That's not for everyone..

Wish I could read the whole study and I wish they were more specific about which autoimmune disease should be explored..