RichGotsPots

Nice find!

I'm trying to see out of all of us who go the SFN skin Biopsy, how many of us were positive.

Well i'm itching to read how their endothelium testing pans out. Kelly, I really salute you. I've been thrown into the caregiver position before to, and it's so draining. Please get some rest and don't be afraid to ask friends and family for help, you deserve it!

Food is a major trigger for my breathing problems, either because of pooling, a hyatal hernia, dryness or something unknown. But what I realized is that when I only drink fresh vegetable juice I'm fine and then when I eat the wrong foods and then i'm active I have breathing problems. I know all flour made foods cause this, breads, pastas and everything else. I dont think its gluten because i went glueten free and still had the problems. What suprised be is when I made fresh potato leak soup and got major breathing issues. I love soups, I love making them and potato leak is one of my favorites to make. Now i'm on a 97% all raw vegetable diet with vegetable juices almost 2 months. Its been helping me more than any medicine has in over a year. But what noticed is that if I eat raw starchy veggies they can cause slight issues for me. So I really limit those especially at night when my breathing is more vulnerable..

This time last year I have the worst pneumonia, if u do a search on here u can read about it. My pneumonia started with the biggest full body chills I ever had. Knocked the heck out of me and I was stuck in bed until after the weekend because I didnt want to go to the ER. Finally by Tuesday they saw the pneumonia. The doc wanted to only give me a zpack for 10-14 days but I insisted on getting tamiflu too. Sometimes its bacterial sometimes viral. Well it worked but my lungs were on fire for 1-2 weeks at least. But my fever cleared up. And pots breathing problems is the worst for me. Also I got vit C, drank fresh lemon water, took olive leaf extract and low dose of zinc all day long...

Cool so maybe it's mcad?

I drive, but I have days when I can only drive one mile or else I have breathing problems, other days I have been able to drive an hour, with someone in the car with me. I'm not a fainter but POTS messes up my breathing. When I drive its like my brain forgets to nreath and then my breathing gets harsh, I get anxious and have full on adrenic attack. One. Of these sets me back months in my progress..

QSART is good but according to www.therapath.com the lab who analyzes the biopsy, skin biopsy is more sensitive. Also since a lot of people will probably find it tricky to find a good Neurologist who does it, i did a little searching and found a Neuropathy org that has a list of medical centers that test for it by state. The other route is to look for neurologist who deal with pain. Even though having sfn doesnt mean you have pain like large fiber, these doctors might also be aware of skin biopsies and QSARTS. Here is the list: http://www.neuropathy.org/site/PageServer?pagename=Resources_PNCenters

Well I got my results back and One biopsy for SGNFD was 19 and the other was 25 and both say anything below 36 is abnormal so I'm guessing that 19 one is very abnormal. The Efnd was normal in one and low normal in the other. Not sure what it means. I just faxed over a bunch of blood work I did so he doesn't re-order the same tests. The nurse said he is testing for 15 different thing especially diabetes. But I got a general diabetes test done just not a fasting one because I cant wake up early enough for it :/ also he want to send me to JFK hospital in nj for autonomic testing which is curious since he knows I already got two autonomic tilt tests... We'll see if they have more advanced testing...

Just got the results of my skin biopsies. I had very abnormal results and have small fiber neuropathy. I'm very excited about it, because I'm hoping it will lead to a cause of my POTS, which I think is autoimmune. The lab that analyzes the test is https://www.therapath.com/ They also do testing for mito. Too I think since they do muscle biospy labs.. I don't know the details of the results yet. Like what % of nerves are missing. They are sending for bloodwork and they want to send me for autonomic testing at a local hospital, even though the dr knows ai already had 2 TTT, so I'l find out all the detail tomorrow when I call the nurse who is arranging everything.

That is pretty obvious, since all heat expands and all cold contract. Just check your tires

This is part of a mito cocktail. I've taken it for months and don't see an improvement. I'm wondering if the age thing has something to do with it and why..

First off great diary post! Second off looks like Vandy is reading my posts lol http://forums.dinet.org/index.php?/topic/18585-testing-for-endothelial-dysfunction/?hl=endothelial I posted back in 2011 for endothelial tsting in pots. @kelly can you tell us what the results of the testing was? Also did they tell you which meds you trialed? Did you see my post about salt causing adrenaline? I do think there is a difference btwn iv saline and eating salt or drinking it.. @i hate banannas, 24 hour urine catch tests for pheo and the way kelly got tested is for hyper. @kelly can you tell us what your supine ne was compared to standing? Abdominal binders are give me too much chest pressure but thigh sleeves are perfect for me..

Issie, the reason I'm doing the opposite is because i'm not a pure hyperadrenic like you. I have more hypotension then hypertension. But either way I only eat raw vegetables on my new diet, which is not at all the normal american diet or close to it

All I know is he does skin biopsies often. He only did top of my foot and side of my ankle on the right side for both not the hip. I'll google it. He said there isn't much average data to compare in other locations of the body..

"It has long been thought that excessive salt consumption raises blood pressure by increasing blood volume, but researchers at the Boston University School of Medicine have conducted a research review that suggests another mechanism may be at work." http://www.foodnavigator-usa.com/Science/Salt-increases-blood-pressure-by-adrenalin-not-volume-expansion

Novel SPG10 mutation associated with dysautonomia, spinal cord atrophy, and skin biopsy abnormality. AuthorsCollongues N, et al. Show all Journal Eur J Neurol. 2013 Feb;20(2):398-401. doi: 10.1111/j.1468-1331.2012.03803.x. Epub 2012 Jul 12. Affiliation Department of Neurology, University of Strasbourg, Strasbourg, France. Abstract BACKGROUND: SPG10 is a rare form of autosomic dominant hereditary spastic paraplegia (HSP) caused by mutations in the KIF5A gene, which may be involved in axonal transport. METHODS: We report the characteristics of a French family with a novel missense mutation c.580 G>C in exon 7 of the KIF5A gene. RESULTS: The proband and his sister presented with an adult onset HSP, a sensory spinal cord-like syndrome, dysautonomia, and severe axonal polyneuropathy. Contrary to the proband, his sister presented a secondary improvement in spasticity and walking. In the proband, MRI findings consisted in spinal cord atrophy and symmetric cerebral demyelination, whereas the skin biopsy suggested a defect in the number of vesicles and synaptophysin density at the pre-synaptic membrane. CONCLUSION: This study extends the phenotype of SPG10 and argues for abnormalities in the axonal vesicular transport. © 2012 The Author(s) European Journal of Neurology © 2012 EFNS. PMID 22788249 [PubMed - in process] Full text: Blackwell Publishing Related CitationsShow all SPG10 is a rare cause of spastic paraplegia in European families.

I watched him on pbs he is good. I'm going a special diet I did back in 2006 that healed me. I poor tons of olive oil on my salads. Organic and unfiltered and add some coconut oil and grape seed oil too

Simon didn't die from POTS but I do believe it weakens us to fight off other common illnesses. Its just like someone with COPD wouldn't want to catch pneumonia. COPD doesn't cause pneumonia but it does cause fluid in the lungs which can make the body more susceptible to pneumonia and also the lungs weaker to fight it. POTS takes the energy out of a lot of us especially severe cases. Many of us have so many issues related to different organ, lungs, GI, liver, heart, you name it and one of us have it..

I saw a Neurophysiologist in NJ today for the 1st time and I checked him out before hand that he does skin biopsies and by the end of the visit he asked if I wanted one and of course I jumped at it haha i also asked to have it without lidocaine or numbing. He said he never did that but sure. It felt like a really bad pinch but i played a game on my ipad and it was over in less than 3 minutes. He took on at my right ankle and one on the top of my foot. He knew a little about pots and about a nyc dr who specializes in it. He was originally from England. He also noticed that I can't feel temperature on my shin.. Anyway of the last couple of years I've heard a lot of ppl say they got biopsies and Mayo reports as much as 50% have sfn so I figured I'd poll for some numbers

Can the same doctor checking for mcad check for sfn with the same biopsy?

This is a good question, i wish the clinics documented average age, average life span, ect and followed up long term..

Ive been taking mestinon 60mg once a day for 3 months. I have no bad side effects at all, it seems to make me less thirsty but other than that it doesnt help at all.

This is just a little more info about him that a friend of mine wrote: "So sad to hear of the passing of my friend Simon Waller today. Simon was once an Olympic level competitive ice skater from the UK. Despite being in outstanding physical shape, he developed POTS as a result of an autoimmune disease, just like I did. He had Crohn's. He was extremely knowledgeable about POTS and autoimmune conditions, and even earned the nickname Dr. House from the other POTS patients. He could not find decent medical care in the UK, so he spent his live savings and then some to come to Mayo Clinic in Arizona last year. Many other patients and friends donated to help pay for his trip, because we all wanted him to have a chance to ice skate again and just live his life like a normal young man. I am devastated by this loss. But at the same time, I am furious. How many doctors in the UK told Simon that nothing was wrong, or that he was just being a hypochondriac? How many doctors have told all of us who have POTS that if we just get a little exercise, we'll be fine? There are doctors out there right now who are telling the media that POTS is caused by a lack of exercise. I wish that were true, because then it would be easy to fix all of us. But in reality, many people with POTS, like Simon, have POTS as a result of a serious underlying heath condition that causes autonomic neuropathy. It's time the medical community stops pretending that POTS is no big deal and starts recognizing that POTS can be caused by underlying conditions that need to be taken seriously and treated aggressively. I don't want to lose any more of my online POTS friends due to ignorance and poor medical treatment."

@Richgotpots: Yeah the forgetting to breath thing is ****. Im not sure if its nerve damage though. Others have reported it being transitory for them which suggests it isnt nerve damage. Im at a loss as to how something vascular can cause such a thing though but perhaps hypoperfusion of some tissues in the chest somehow causes a numbness/loss of sensation. For you and I it seems to be a perstitent thing sadly. I wish it were just once in the blue moon like others report. @Foggy01 perhaps damage is the wrong word. Perhaps injured or the programming of the nerve not working. And depending on the level of injury correlates with the incidence and reoccurrence rate. All nerves lead back to the parts of the brain that control autonomic function. So the injury or malfunction could be happening anywhere along that pathway. I found this on a non sited website: X. VAGUS Nerve: Dysfunction of the muscles in the throat, shoulders, and back may create difficulty in swallowing or talking. Drooping shoulders and an inability to rotate the head away from the dysfunctional side may also occur. Malfunctions within other branches of this nerve may cause heart problems (including palpitations and a rapid pulse); breathing difficulties (including slow respiration and a sense of suffocation); a persistent cough; paralysis of the glottis; vocal cord spasms or paralysis (possibly resulting in an unusually deep voice, hoarseness, or a weak voice); and gastrointestinal disturbances (typically, constant vomiting). These nerves also affect the liver, spleen, kidney, thyroid, testes or ovaries. The other possibility is its purely neurological at least the forgetful breathing anyway. Because when I drive I just feel my brain has trouble doing both breathing and driving at the same time. Something I've bever had problems with before. Breathing has always been my worst pots symptoms but in the biginning it was only bad with activity, kind of like asthma would be except it wasnt asthma. Now it's triggered by so many things. That leads me to believe that whatever is causing my POTS is still with me, so I'm leaning towards autoimmune. Hopefully I will get skin biopsies soon followed by a lip biopsy and a muscle biopsy. Blood test are barely 50% accurate for most autoimmune diseases, biopsies are much more accurate and sensative. And skin biopsies are more sensative then QSART for finding neuropathy. But as far as I know they only measure the sweat glands neuropathy which only gives them a guess at the rest of the autonomic nervous system. Breathing, HR, GI, etc are all controled by autonomic nerves and all of us are proof that we have so many differences btwn severity of symptoms. To me that much mean there are differences in neuropathy for those organs..