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arizona girl

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Everything posted by arizona girl

  1. Well it is associated with many medical conditions, including autoimmune disease. My dysautonomia is due to the damage done to my small fiber nerves as a result of autoimmune disease. Is the mthfr gene the one the caused my particular autoimmune issues, don't know, but maybe. It might be another gene I don't know about. Since I have one bad one I may have more. There is a lot of research going on with it. My cardio is who tested mine as it's associated with some cardiovascular disease. The good news is it's easy to bypass. Cut out all foods and supplements that have folic acid the inactive form of folate and supplement with the methyl or active forms of the Bs. Eat lots of fruits and vegetables, folate is already in the active form in those foods.
  2. Thanks Rachel I'm mthfr homozygous and my father is hetrozygous and just had major clotting issues after he broke his hip and had replacement. I'm also back on plaquinel almost two years now. Was put on it about 20 years ago when they thought I had mixed connective tissue. Between that and the thyroid meds my lipid panel and inflammatory markers improved even more then just the ivig alone. Dizzy, if you are mthfr one must be careful with the form of b vitamins they take. Regular or inactive folic acid can build up in the body and cause problems if you are mthfr, as the enzyme the converts is switched and can't process it. I take the active forms methylfolate solgar brand and methyl b12 jarrow brand.
  3. Yes, I think pex can lower that number. As it pulls out all the proteins good and bad. Due ask your doctor. Remember I got anemia after pex along with an infection. So those things should be watched closely. The infection and the anemia were partly why I switched over to ivig. By then though many of the antibodies had been cleaned from my body, though they do come back. I believe the ivig is modulating their ability to cause further damage, at least partly any way. My labs have all improved. I still though deal with muscle spasms and infections here and there. IVIG infusions are rougher when I have an active infection. If you look into rundles research she is studying genes that are associated with cvid and has identified 3. I think that the research on this is still in progress and no conclusions are final on this being genetic. Some of the x linked ones though are. Primaryimmune.org talks about those. In my case I imagine it is, as I already know that I'm homozygous mthfr and my father has the other combined mthfr defect. What are the odds that I also have other genetic defects! I'm so glad to hear that ty is having some improvements, it is so much better then nothing or worst case a further decline. I think that my treatments have stopped or slowed the decline. Of course though now I have the challenges of aging to deal with. Thanks for posting all your research articles, they are so helpful to others here.
  4. Hi momG, Interesting enough your immune system can be both hyper and hypo at the same time. I'm living proof of that. I have a primary immune deficiency (hypo) along with 3 autoimmune diseases (hyper) one of which is hashimoto. Charlotte Cunningham Rundles, MD who studies and treats primary immune diseases like CVID, has a certain percentage of her patients that also present with autoimmune diseases. I just like to say my immune system is dysfunctional. While I have treatment options available for the different autoimmunes and infusion of ivig for the deficiency, they won't cure them. Perhaps stem cell treatments will be an option down the road. It will be interesting to see where this fasting theory goes. It may have some merit as it is well documented that when we sleep and get to stage 4 sleep is when our body does repair work. Sleeping by it's nature is a fasting state, so maybe that has something to do with the repair cycle of sleep working. I didn't see where this study though gave details to the type of fast they used. Here is a link to one of her papers on cvid and autoimmunity: http://link.springer.com/article/10.1007/s11882-009-0051-0#page-1
  5. Hi Ruby, I also have cvid/hypogamma, along with a few autoimmune diseases that attacked my small fiber nerves causing the autonomic neuropathy/dysautonomia symptoms. I've now been on ivig/privigen monthly for about 3 years. I'm not cured but my infection rate dropped and some of my autonomic symptoms and nerve pain improved. Don't know if you've decided to start the ivig or subq or not, if you do though I can share my tips I've learned through the process with you.
  6. Hi Sarah, Been following your story. Yes I have had elevations in both those labs. I turned out to have several autoimmune diseases along with an immune deficiency. While they point to inflammation they are considered non specific. With the elevated wbc and platelets. There are immune deficiency conditions and autoimmune diseases that can cause these. Have they tested you for any hemo autoimmune disease? With the elevated infection markers, have they tested you for any primary immune diseases? The main test would be a total quantitative immunologlobulin, which tests igg, iga, igm, along with sub igg panels. I like the website http://primaryimmune.org as a good resource on these conditions. My dysautonomia was also hyperandrengergic. With elevations in both my bp/hr, along with sudden syncope when pushed to high. My catecholamines almost triple on standing as compensation for the small fiber nerve damage of my autonomic nerves. Skin biopsy proved my loss of nerve density or sfn. While the autoimmune attacks did their damage, my symptoms did not get as severe as yours. I have hashimoto, lichen planus, and undifferentiated connective disease. Had a positive skin biopsy pointing to early lupus lesion and positive ana's and smrnp and ssa at times. Treating the autoimmune diseases and hypogammaglobulinemia, infections when they occur has slowed progression, not cured by any means, but for now I'll take any improvement or be grateful for not getting worse for now. Hope you get your answers soon and on to treatment. I know how difficult and stressful the diagnostic process is, hope your on the other side of that sometime soon. I'm praying 2015 will be a positive and Happy Year for us all.
  7. Has your allergy immunology doctor tested you to see if you have a primary immune deficiency? Your total quantitative immunoglobulins which are igg, iga, and igm and sub iggs should be tested when one can't clear an infection. You can read more about these at: http://primaryimmune.org Immune problems can underlay and be the source of dysautonomia/pots like symptoms, not the other way around.
  8. Hi sos, I've had the symptoms you've described. The throbbing vibrating leg pain is a classic symptom of peripheral neuropathy. This happens when the small fiber nerves are damaged and can cause many dysautonomia symptoms. The small fiber nerves also control your autonomiic and sensory functions. The sfn are what allow your blood vessels to constrict on standing and push your blood up to your brain. When those nerves are damaged the blood pools in the lower half of the body causing many of the symptoms you just described. The longer you are upright without laying down the worse the symptoms become, including leading to fainting. Sitting will not completely reset this, lying flat is better. A skin biopsy can determine small fiber nerve damage. Then one must look into the many potential causes if that comes back positive. Diabetic neuropathy or diabetes is the most studied cause. However autoimmune diseases, chemical exposure, injury are also possibilities. Try doing some research on this to better see if this fits your symptoms. There is a lot posted on this topic if you search the forum.
  9. Hi Abby, Welcome to the forum and for asking your question. The type of dysautonomia you are asking about is a genetic form. Most of the information and members here at DINET suffer from other types of autonomic dysfunction that can be caused by many different things. The best resource for the genetic form you are asking about can be found here: http://www.familialdysautonomia.org/ As it sounds like this young man has a mild form of it, it may be possible for him to have a very normal life. There is genetic testing available if having children would be a consideration. I think that most of your questions can be answered by the organization I posted above. As someone who has an autoimmune cause of my dysautonomia and who has to live with my illness every day for the rest of my life, I can attest to the fact that you can still live a very full and happy life. Often those who have medical challenges in their lives are able to offer more compassion and empathy to others then someone who has never had to struggle with health issues. We are not our illness, it just part of who we are. We just have to go about things and manage our lives and illness in a different way than a fully healthy person. What helps us the most is family and friends that support and understand the way we have to manage our lives. That we have challenges when often we don't look sick at all. Some of us are open when we are struggling and ask for help, more often we keep it to ourselves and don't ask for help. If family is attentive then they will learn when to step in and help and when to back off. With everything in life often our challenges have silver linings and allow us to grow into better people because of them. They make us who we are, and if someone falls in love with us, that evolved person is who they love. What a gift.
  10. I've seen this discussed on the forum before as adies pupil. Mostly it isn't serious, it can however be a symptom of other more serious neurological conditions. If you are on here and also have other autonomomic and dysautonomia symptoms along with the pupils, it might not hurt to research some of the conditions mentioned in this article to make sure you don't fit other associated symptoms/conditions. Neurological disease often can be a primary cause for dysautonomia and pots symptoms. Happy reading. http://www.journalofoptometry.org/en/bilateral-tonic-pupils-secondary-to/articulo/90302861/
  11. Thanks Ifree for posting this here. DINET has also posted the link on it's facebook page and in the information forum. It will be interesting to see what they present. Hope everyone poses some good questions to them. Anyone that does participate, please come back and share with the rest of on the forum.
  12. If there is such a thing as true primary pots, it is a diagnosis of exclusion or idiopathic, meaning they can't find the cause. He is saying that you have the symptoms of pots secondary to a primary cause, that has yet to be diagnosed. He is referring you to a neurologist to try to figure out what is causing your symptoms that he has labeled pots like. There are many neurological conditions that cause dysfunction of the autonomic nervous system. Small fiber nerve damage to the blood vessels is one of them and could explain his description. A skin biopsy can diagnose that along with blood test for the most well know neurological conditions that attack those nerves. Small fiber neuropathy, like pots, is not always end line diagnosis. Many disease states can cause sfn, diabetes being the most common and most studied. Autoimmune disease and chemical and viral or infectious exposures can too. Symptoms can improve both by treating the actual symptoms, as he suggested, but also by properly diagnosing and treating the primary cause. I hope that helps make more sense of it for you.
  13. numerous, but I have autoimmune small fiber autonomic neuropathy, which is nerve damage of the small fiber nerves that control your bodies autonomic functions. These were probably damaged by untreated autoimmune disease. I have a surge in norepi on standing as compensation for my blood vessels not constricting due to the nerve damage. So my bp/hr go up on standing and drop low on laying down. Labetalol as an alpha/beta blocker helps with those kind of swings. I was also found to have hypogammaglobulinemia of my igg and igm, which are your master infection fighters of your immune system (ivig) treats that. I have hashimoto, thyroid meds, undifferentiated connective tissue disease, plaquenil, autoimmune lichen planus, pcos/high insulin glumetza, and am homozygous for a gene defect called mthfr, take the active forms of folate and b12 for that, and d3 for low vitamin d. Many disease processes can damage the small fiber nerves. My sfn was diagnosed by skin biopsy, tilt table and my symptoms. Those of us that have a hyper response are in some ways lucky enough to have that back up system in place that forces our bp/hr up. I suspect that those who are hypotensive on standing have lost their bodies ability to do that. Of course that has not been proven yet, but that is what I suspect.
  14. I take labetalol prescribed by Dr.Grubb. I could not continue with clonidine as my body had an almost addictive response to it, requiring more and more to keep my blood pressure down. I use the short acting low dose labetalol and tirate it up or down as needed. Treating my causes has helped improve it, as well I don't swing as high or as wide anymore. I still have days where it acts up though.
  15. Oh don't I know it is hard to find a good gi, especially a female one. Glad to hear you've got your follow up appointments. You may want to mention small fiber neuropathy which could be contributing to slow motility and or spasms, the gi tract moves things through those nerves. You have documented POTS, it is not much of a leap to connect the slow motility to the POTS and then to possible neuropathy. Also if your ovaries where removed along with thyroid and parathyroid that can also impact your hormone levels which can impact autonomic functions. I have hashimoto and getting my meds at the right dosages has been a challenge and effects my ability to produce proper moisture. I wouldn't worry too much about your docs ego, unless it affects his treatment plan for you. When it comes to procedures and surgeries, these are often revenue sources for the doctor, so they can be looking at their own pocketbooks at times when suggesting a procedure. I've had that happen to me. I do my own research before I ever do a procedure, and only do it if I feel it is right for me. I get autonomic symptoms with procedures so I have to be extra careful. Yes, I'm in arizona, but I was born a New Yorker and spent my childhood in Long Island. I have great memories of exploring the woods and doing beach activities. Good luck, I hope you get to the bottom of this soon. I know how uncomfortable a bloated belly can be. I also used to get bad headaches when things weren't moving. Take Care!
  16. You did get the results of your colonoscopy, didn't you. Either way go to that doctor and get the written report of the procedure and the doctors notes. You'd be surprised by what you will read, that you aren't told. If it was done in a hospital setting, then you can get your reports straight from the hospital. It sounds like you may be dealing with an ego problem with your current gastro doctor. If that is the case then I would consider finding a new physician. Fresh eyes are always a good thing. Then all you have to do is take the report to the new doctor. Maybe see if you can find a good female gi in your area. Women's issues can also be a factor. Is your belly bloated because enough is not moving out?
  17. Hi Lynnie, It may be time to seek a second opinion. Also if the pain becomes too intense and nothing is leaving your body, you could have an obstruction. If you suspect that at all an er visit might be in order. The last thing you need is a situation that could cause a rupture. I waited 4 hours before going to the er with a small rupture; going saved my life. I never thought I would ever need to go to an er, so I second guessed myself. ER's deal with obstructions on a regular basis, it is one of the most common emergent surgeries that are seen. They also have better imaging than a colonoscopy, that can see what is going on with your entire gi tract. You could have something higher up than what a colon scope can see. If you lived in arizona I'd refer you to my surgeon who was very good at helping me decide on surgery or not, which was a big decision considering that autonomic dysfunction is a factor with surgery. Considering you did just have a colonoscopy and these symptoms became worse after it, perhaps some damage occurred during it. If that is the case, then the same gastro who did the procedure, may be in denial a procedure he/she did may have caused damage. I myself have small fiber neuropathy, that affects my motility. Diagnosed by skin biopsy. I can not take fiber products as it further slows down the works and my gi nerve damage is not strong enough to push it through. I have a few things that have worked for me 100% cherry juice, diazepam, and several large glasses of black iced tea, along with walking. Not altogether of course. Low dose diazepam is a muscle relaxer that doesn't dry you out, or space you out like some of the other relaxants. Cherry juice works better then prune juice. I'm guessing the tea works because it is a stimulant, along with the extra fluid load. Good luck to you, and please don't continue to suffer at the advice of one doctor. A doctor is a person just like the rest of us and it is just one opinion, and that doesn't mean one doctor's opinion is the correct one.
  18. Your guy is such a trooper and so are you. You both have hung tough through this and I'm praying that you will be successfully on the other side of this sooner rather then later. At least this is hopeful, you now have some evidence that the treatment is working. I was on pex for 4 months and I was getting treatment with another women who had cidp. She had been getting it for many years and it was the treatment that worked best for her and helped her have a better quality of life. In her case cidp never clears completely and requires lifelong treatment. With time hopefully they will be able to clear these antibodies from tyler's body and he won't need to stay on it long term. It is hopeful that your doctor feels that is possible. If he ends of needing to stay on it long term though, it can be done the women I mentioned was retirement age. Had been having it for decades and still was living her life thanks to the pex. I pray his course ends up being shorter and successful. Here's to more and more perkier, cheerier and talkative days.
  19. Just a thought, but have you checked with your cardiologist who did your valve repair? As you know problems with it can also cause the fatigue you are describing. I hope you figure it out. It is always disheartening when things improve and then have a set back. It does though give us a chance to see that we were actually feeling better for a bit.
  20. DI posted this on their facebook page. Dysautonomia International shared a link.August 31Interesting research news out of Mayo - many POTS patients are NOT deconditioned! "Our novel observation elaborates current models of POTS and injects a cautionary note on invocation of deconditioning in this population." They found that hyperkinetic circulation may lead to the exercises intolerance seen in some POTS patients. They also propose that in POTS patients in which deconditioning has developed, POTS may begin as sympathetic nervous system dysregulation of the renin-angiotensin system, leading to low blood volume, which leads to deconditioning. Article here:http://physreports.physiology.org/content/physreports/2/8/e12122.full.pdf
  21. Hi lynnie, What have your doctors told you? I'm not familiar with this med. I imagine though with your medical history they feel they need to supplement you with what your not getting, which has caused the osteo. Have you searched the side effects of it yet? The thyroid issues and the neuropathy are often something that can cause symptoms of pots. Do you feel your pots symptoms are being managed well right now? It's always tough when you need to add something new. I try to only do one thing at a time, so I can see if my symptoms change. Let us know how it goes.
  22. Hi becia, Glad to hear you are in a better place and out of the hands of that hospitalist. After what happened to a fellow forum member, it raises red flags to me when they say the kind of things that doctor was saying to you. That dose does sound like a high starting, do you have control over how much of it you take. Most docs are good about letting one tirate up. You always sound cheery even when things are very difficult. I think you are inspiring and you lift the rest of us up with your fortitude. I wish well sooner rather then later.
  23. This sounds really really good. Thanks for sharing the details. Sending good thoughts and prayers to tyler and the rest of your family.
  24. Thanks for the update! This sounds somewhat hopeful. Don't know about the d and the fish oil, but it could make sense, certainly couldn't hurt to try. That is good to hear he is happy and alert, that has got to be a sign things are improving. They keeping an eye out in his blood for anemia and infection? Good idea on the mask, it's been on the news about that virus. I get low d too. I've tried to stop taking it, only to have my numbers drop. Of course it is hard to tell if it's helping with all the other stuff going on. I had a fungal infection and now have a bacterial one probably uti, so had a rocephin shot yesterday. The good news is that this is the first bacterial infection I've had in almost two years, which means the ivig dropped my infection rate. I'm wondering if that glabrata fungal infection converted over to a bacterial one after getting uti symptoms and not treating them. IVIG does nothing for fungal. It is so hard to figure all these things out. I'm so glad you seem to have such a smart doctor. Hope with time the prednisone helps. Hang in there momma bear, you've done a good job watching out for your boy.
  25. Hi Jerry, Chaos kind of answered your questions. Thanks Chaos! I did want to mention that if you don't have a automatic blood pressure cuff yet, you will need to buy one in order to do poor man's tilt test. There are also forms of dysautonomia that cause the bp along with the heart rate to go up. That is called a hyperandrenergic response and is caused by the body shooting off extra norepinephrine in order to constrict the blood vessel to force blood to the brain. The test for this is called a supine to standing catecholamine test. I have hyper pots and near syncope, due to the small fiber nerve damage. Also here is a link to a research article describing a pots evaluation: http://www.bjmp.org/content/postural-orthostatic-tachycardia-syndrome-pots-evaluation-and-management You can also search all the old forum posts for more information on anything you are interested in. Much of what your asking as been asked and answered many times on the forum. Yes, physical trauma like a surgery can trigger dysautonomia or damage nerves. "But given that the trembling is arms and legs and trunk I'm starting to think it's endocrine rather than neuro." In this quote you meant to say you think it is neuro rather than endocrine right? It couldn't hurt to have both evaluations done, but I'd lean towards neuro. Also before your appointment with your neuro, did you attempt to find out if that doctor is familiar with small fiber neuropathy testing and/or autoimmune neuromuscular disease? There are many types of neurologist and they tend to subspecializes, ie brain/seizures vs autoimmune neuromuscular. A brain guy isn't going to be much help if you're experiencing neuromuscular causes. I got to my current neuro after asking the neuro I was seeing who wasn't finding anything from a large fiber perspective, "Well, what about small fiber neuropathy?" It was like they were the secret magic words that opened the door to me being sent to the right doctor. I wish you a quick and easy diagnostic process, that is what I would have liked someone to wish me. However, be prepared that this might take a while to get answers.
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