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Neshema1

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About Neshema1

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  1. Sorry to revive an old topic but Im confused. I have low stroke volume bad bad bad pots, severe hypovolemia, was in excellent shape before pots, always fainted for unknown reasons to me, but had very low Bp. Ihave been worked up ad nauseam for pots and more (I have symptoms of msa). So, my heart is normal size, not small, as Levine claims and my EP recently mentioned he heard was cause of low stroke volume. I have had mris, pet scans, u name it. I am practically home bound. I have been approved for PT, but have no recumbent bike, and have developed this weird bone problem, the mito doc thinks
  2. This is a sad subject for sure. Maybe I'll share when rested. My sleep-wake cycle is backwards again. It doesn't help matters but when my sleep-wake cycle is better, still have dysautinomia. I wasn't gonna let pots run my life either and I do my best but ya know, some limitations are real & I met Christopher Reeve once & think I try as hard as he did, but I would ask him to get up and run a marathon. Some things are just not going to happen... Today..maybe tomorrow. I had an amazing life. I tried so hard to keep it as it was. Inmay have wanted to keep it, but I'm not sure otters were a
  3. It happened to me. I could never gain weight & gained 36% of my body wt in 2 2 wk periods. No explanation. Docs cared more when I was underwt (I'm very small boned & never looked anorexic but tried my whole life to gain wt & ate like crazy). After I had pots abt 2 years I suddenly gained that weight. I hardly think that was possible from "deconditioning" in that time frame. The docs kept telling me I looked better As my blood tests & various other tests were getting worse. That is. I began shoeing signs of malnutrition with the weight gain. I got gastropareses around the same t
  4. I have pots & celiac. I have the nasty seizures that can last 2-4 hours. It is awful, I know. I was dxd with celiac at abt age 13 mos. I was on gluten free diet for years as a child. Then the docs decided it was something else, which I now know is another symptom of celiac. But, I have been off the diet for years. Every doc sees all my dxs & deficiencies (I can share if u want) and thinks I have celiac, except my GI doc. So I kept telling them I don't have it, although I am a textbook case. I now know what led my false neg test results my GI found. I recently had DNA testing & sure
  5. Yes, my daxor BVA was at vandy. My red blood volume was something like 35%.,..severe. My CBC is even looking bad these days. My NE also is wacky high. Thanks for the info abt the daxor site. I need to check that out. If I didn't mention before, if u have severe hypovolemia, u might want to get your albumin checked.
  6. I've had a bad experience at Mayo in Rochester. I heard goodman in AZ is good.
  7. I had my blood volume analysis at Vandy and it was severely low (30%). As I understand it, when blood pools (e.g. to the stomach after eating to help digestion, or upon standing POTS patients don't compensate for the redistribution of water and blood), the blood and oxygen to the brain are decreased. I imagine one might have pooling without hypovolemia, but dont quote me on that. Seems CHF causes pooling, and im not sure they have hypovolemia. Also, hypovolemia can be caused by trauma to the body and severe bleeding. Sodium co-transports with Norepinephrine. Sodium is often lacking in POTS, an
  8. i came across this thread when looking up info on the mito cocktail. so, I am kind of reviving it to see if there have been any updates. I also was suspected of having MG and tested negative. I was told I had "Adies Tonic Pupil" in about 1996, back in the days when my dx was "easy fainter." I also have autoimmune disease. My pupils do not react to light well, and one pupil is bigger than the other. Also, they have become droopy (they used to be quite big) in the past year or two. Also, I have retinopathy, among so many eye dxs that it's amazing i can see (with some blind spots & a lot of b
  9. Alas, one last thing. Niacin scares me. Isn't it a vasodialator? Causes flushing. Ok nite for real! Profs talk too much!
  10. Oh & btw, my b12 was wacky high befire I went on b vitamins & it came down to 400s. Seems like my NE, which is >1600, severe hyoovolemia measured at vandy, hyponatremia, hypo this hyper that. Now the epogen already (my second try with it) causing severe iron deficiency... Blood counts been wacky. Used to have perfect CBC for such a sick Person but dig a bit deeper & find stuff like untraceable vit D, gastroparesis, neurogenic bladder, dysarthria, dysphagia, raynauds, sjogrens syndrome, adies pupil.. U get the picture. Oh and lest i forget a tiny brain lesion that doesnt explai
  11. Wow! Thanks for all the replies & encouragement & sharing! I agree on the MCAD issue. I need to 1. Go hack and read the manifesto I wrote u all so I dont repeat myself - been brain dead from a nasty potsy seizure & b. Get some rest- did I say I'm brain dead from a nasty potsy seizure & don't want to repeat myself.. Lol! Don't forget the mitoaction dysautonomia mito mtg tomorrow at noon EST. I hope I remember! Night, friends! Xo
  12. Cont'd (sry abt length but hope you will read, as u have time, "energy" & patience)... Even with the free weights, I'd get so sore that in college, I remember many times sitting on the grassy quad/mall with friends & not being able to get up. Now, when I fall or faint (I used to faint out cold most of my life but since I got really sick abt 5 years ago, I tend to be unsure if I fell or fainted unless I feel my heart sink & the room go dark first & I get convulsive syncope, which is those nasty seizure ppl talk abt here). I'm having one system after the other involved & wish
  13. Hey todd- thanks for the quick reply. Was it all conclusive? Can u believe umdf asked me to be a patient ambassador? I'm just learning by talking to ppl, reading & participating in the online chats. Seems like they all ask me abt their dysautonomia-I know too much abt that! So I'm looking for a mito doc, preferably one I can travel to without dying from the trip. I'm really very much beyond pots, unless there is some progressive form of pandysautonomia. At this point, the big guns in dysautinomia think I either have mito or some overlap of every pots subtype, msa, & paf. The whole thi
  14. I read thiamine is also helpful (b1). I'm also on cerafolin NAC (rx b with NAC). also b5. These are not the usual b6 and b12 & folic acid ppl talk abt. Yes, I also have been thought to have mito but been too sick to go for my workup. So I've long been trying variants of the mito cocktails. Riboflavin is best one so far. I'm curious if anyone here with dysautonomia & mito had a muscle biopsy or genetic tests. Btw, there is a "dysautonomia mito" meeting (see mitoaction's site for info) on fri. U can call into a toll free nbr to participate. If anyone knows a mito doc near Chicago, please
  15. I felt horrible on ssris & snris! I even got depressed, which is abnormal for me. For me, adderall helps my vitals. But I'm on other things too, epogen, ivs, mestonin, clonidine.. When I say it helps, it's not been a cure by any stretch of the imagination. My case is pretty severe. I've reduced my dose of adderall over time & feeling I need to go back up a bit. It works like midodrine, but midodrine had worse side effects for me.
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