Yolaclover Posted May 22, 2011 Report Share Posted May 22, 2011 I noticed there were a lot of causes for POTS, did your Dr. check you for all of those things? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 23, 2011 Report Share Posted May 23, 2011 We think alike. When this all began I looked at Dinet's list of causes and figured I'd go one by one, like going down a checklist, until I found THE cause. So I've been checked for a lot of them - no real answer so far. I still have a few things left on the checklist, but I'm beginning to run out ...and that's when it gets scary. It's also difficult with some of these to find a Dr. who knows anything or would be willing to explore the unusual with me. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 23, 2011 Report Share Posted May 23, 2011 Over my 5 year journey, I've had all the endocrine things checked, and that's it. I've even had abnormal endocrine things, like the really low aldosterone, that have never been thoroughly investigated. They just did a recheck ONE YEAR later, at my request! It happened to be normal that day.I've never had the majority of the possibilities looked at. I am bold enough to go to doctors and explain that I'd like a few things looked into, and they actually ignore me. It is so frustrating. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted May 23, 2011 Report Share Posted May 23, 2011 The first couple idea I brought to my doctor he tested for, but when they came back negative, he started to think I was a hyperchondriac (know knows I probably am but still). I have given up really. I do have a rhemetologist appointment in July, but if its not autoimmune (i am pretty sure it is though) then I will stop looking. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 23, 2011 Report Share Posted May 23, 2011 The first thing I wanted to be checked for was a mitochondrial disorder, and it turned out to be my root cause. I think as testing gets easier and cheaper you'll see 99% of us have a mitochondrial break down as the root cause for our dysautonomia. Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted May 23, 2011 Report Share Posted May 23, 2011 Todd -Once it was determined that it was a mitochondrial disorder that caused your dysautonomia, what was the treatment plan and how are you doing now? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 23, 2011 Report Share Posted May 23, 2011 Todd - can you explain mitochondrial disorder? When I looked into it (a while ago) I just came up mostly with specific disorders that affect mainly children (or are obvious from childhood). Can you tell me about mito in easy to understand terms - I found this a confusing area to explore on my own. What is it, what type of Dr. knows about it, how does it cause POTS etc.Thanks. Quote Link to comment Share on other sites More sharing options...
misstraci Posted May 23, 2011 Report Share Posted May 23, 2011 I'm not postive but I associated my POTS with post-pregnancy as it began a few months after giving birth or (so I think this is the cause). I know I do not have an endocrine abnormality, that is ruled out. I have a really high ANA count, does anyone else have this and does it mean autoimmune? and does anyone have the MCAD-mast cell, could you explain that to me please?!Thanks Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 23, 2011 Report Share Posted May 23, 2011 I don't want to highjack this thread but real fast I had metabolic testing, lumbar puncture (spinal tap), and fresh tissue muscle biopsy. My treatment plan was based on the results from those tests, and a year later I don't feel any different or any better. Naomi you're correct most of the information out there is for known mitochondrial variants, what's new in this testing is looking for breakdowns in the 4 complexs of the respiration chain or oxidative phosphorylation. UMDF.org or mitoaction.org have more on adult mito. I'll bet there are plenty of others on this board with mito diagnosis, PM if you would like other details. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 23, 2011 Report Share Posted May 23, 2011 Or, y'all could start a new thread titled "mitochondrial..." so that the rest of us can benefit, too. Since it could be a contributing factor for some with POTS, it definitely deserves a spot in the forum. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted May 23, 2011 Author Report Share Posted May 23, 2011 Hijack away todd this is fascinating! Quote Link to comment Share on other sites More sharing options...
55baron Posted May 24, 2011 Report Share Posted May 24, 2011 Does it really matter?? I don't believe that you will ever truly figure out the cause. there are alot of could be's or maybe's, but there isn't a test or anything to figure out exactly the cause. The treatment doesn't change.As for mitochondrial disease, my daughter was just tested, total DNA make-up. ($$$$) She has 3 dna positive malformations, definately mitochondrial disease. One is associated with infants dying at birth. My daughter is 19, obviously doesnt pertain to her!! Non of the three pertain to her, so she definately has mitochondrial disease, but since the testing came before the explanations, thats it!! We don't know....With POTS, there is alot on non-answers. I dont think there really is a for sure answer to any of our questions!! If only there were........ Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted May 24, 2011 Report Share Posted May 24, 2011 I think I just gave up because to me I dont see a point. I got tested for the ones that can be treated, but others like EDS, there is really nothing you can do about them. Its just another diagnosis with the same treatment plan to treat POTS. The biggest ones I got out of the way were MS and the "deadly" ones. Those scared me, but once I found out I didnt have them, I calmed down an lot and just accepted it.I am being sent to the rhemetologist because my ANA was very high too. BUT its not just from the test. I have high fevers on and off for a long time, on and off a again EBV as well as sore throats. I really think mine is autoimmune. Too bad it takes FOREVER to get into a rhemetologist. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 24, 2011 Report Share Posted May 24, 2011 The cause of POTS in the majority of patients is still conjectural and unknown. Anyone who tells you otherwise is misunderstanding the science.Most of the causes listed on this website are conjectural (nut cracker, etc), rare or incorrect (liver cirhosis tends to just cause postural hypotension). However patients with POTS AND an autoimmune illness tend to do better on mestonin according to Dr Grubb.As for Mito - big call there mate. I thought the POTSies with Mito were the ones that got progressively worse??? Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 24, 2011 Report Share Posted May 24, 2011 ram I know it's a big call and it comes from speaking with and emailing with mitochondrial doctors, my sister and her kids all have this also. The first symptom they look for in adult cases is dysautonmia, and depending on your level of dysfunction you're right it can be progressive. My current neuro at the MDA clinic continues to tell me, if you had to pick a neuromuscular disease to have.....this is it. The biggest draw of energy or ATP in our bodies comes from our brain and nervous systems. This ties into alot of Dr. Myhill's research also, her testing of our respirtory chain functions my turn out to be the cheapest way of finding breakdowns. Cathy I agree with you to a point, there isn't much they can do to help. But for me the diagnosis gave me a real disease, I no longer had just a syndrome, and it answered the pure exhuastion and weakness and cramping (on top of all of the POTS stuff) I was going through. Getting on disability with POTS is tough, once I had the mito diagnosis I was approved in 5 weeks. Now I'm fighting the insurance company to cover my CoQ-10, that is from Tishcon and runs around $200 per month.This is just the path that I dug out doing research and trying to solve what was wrong with me, it took 23 years to find and be diagnosed with POTS. Then only 10 months to be diagnosed with mitochondrial disease. All of it done with online research and requesting doctors to run tests, no doctors ordered a TTT or a muscle biopsy. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 24, 2011 Report Share Posted May 24, 2011 Yes, there are many causes, however, sometimes it's easy to rule out big parts of the the list by the doctor taking a good history. It took a long, long time for me, but it's pretty clear now that I have a bone growth and collagen defect--collagen is the glue that holds all your body structures together, including veins and arteries...mine are too stretchy. Quote Link to comment Share on other sites More sharing options...
55baron Posted May 25, 2011 Report Share Posted May 25, 2011 My daughter was diagnosed (in this order) Gastroparisis, POTS, (at the same time) eds, chronic intestional pseudo obstruction and a week ago mitochondrial disorder. She was approved for SSI at 18, with only the first three diagnosis, after only 3 weeks.All of these diagnosis are "rare" "untreatable" conditions. Even Mitrochondrial disorder. THe defects Ana has make no sense, but she had the entire dna workup, so its correct. All these syndromes are real diseases. They all had test to diagnosis (except eds). Just treat the symptoms! In the beginning, I wanted something with a name that they could fix! So much for that!! Todd, do you notice a difference with co Q 10? Ana is on it again for the second time. She doesn't notice any difference. Cathy Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 25, 2011 Report Share Posted May 25, 2011 Cathy I'm so sorry to hear about your daughter, I really hope you can find something to help. I do know these "syndromes" are real, I'm more talking about some of the medical community out there that doubt we're really sick. I don't feel much different on the CoQ-10, not all do, but it does do two things 1) increases the amount of ATP we're producing 2) lessens the amount of free radicals from our broken OXPHOS process. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted May 25, 2011 Report Share Posted May 25, 2011 The key is finding a good doctor that knows about the supplements that will support our bodies. I have integrative doctors so I am helped with many supplements. I take so many that have helped me. You can actually take ATP under the tongue and Glutathoine in Liposomal form. New and wonderful ways to get these important things! CoQ10 is great, DRibose and so many others. ALA of course. They can support our health so our bodies can heal better. Quote Link to comment Share on other sites More sharing options...
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