zerohours000

I’m also having that burning sensation in my limbs occasionally in my throat, anus, and even privates. And I think the ringing in my ears is also neuropathy, considering there’s nerves in there. I hear both high pitched whines and occasionally a “boop”’ and even entire words. Has anyone ever experienced that? Entire words in tinnitus?

@bunnyThat’s what mine is: a high pitched whine. Like radio frequency. And then I’ll hear a “boop” sound, as if from a sonar device. So annoying. I don’t have high BP but thinking it’s now nerve damage in my ear.

Thanks. I’m currently in the process of switching PCPs and hospitals I go to. Last one said it was all somatic. So lazy. Why bother going to med school? Everything *could* be somatic. Run some d*** tests on your suffering patients.

It never came back. It seemed to come, go, and then leave me with dry flaky hands. And then nothing after that. My palms and feet are basically like they were before. I will say, however, that my nails noticeably deteriorated. For example, there is now a red band that goes across each one of them. I've read somewhere that this could be autoimmune as well, or from lack of vitamins or nutrients --- kind of like undernourishment. But yeah, no rash in two months or so. I didn't have insurance at the time so I couldn't seen an infectious disease doctor. In fact, I didn't have insurance for the first month of all this --- which was awful. My onset was on the first weekend of the month and my insurance didn't kick in until the last month. They just told me I had the flu and sent me packing. What an awful system.

Well. It was a rash. But it wasn't itchy or raised --- like hives. It was below the skin and never itched. Which is why it's so bizarre. Yeah, they say everyone in New England is practically vit D deficient. Though my levels were never low ever once in my life. So who knows.

Because I "passed" the TTT. She was the rudest doctor ever. First she told me I had it --- this is without the TTT. Then, after the TTT, she rudely said my sleep deprivation is why I can't remember her saying I didn't have it. But other than that, she never gave any more reasons to me. She never explained anything, or what I'd be going through --- nothing. Just in, our, you have this, do this test, you don't have it. I naturally lost it on her.

I’m always looking for common starts and onsets, but not sure that has been fruitful. I’ve found one person so far with similar origins: flu-like onset (but no flu); followed by b12 deficiency-like symptoms; then a rash on my hands and feet (that went away after a month or so followed by dry skin—which also went away). And basically now I’m suffering from lack of sleep; dry eyes; weird pains in calves and fasciculations/ twitches; and GAD and depression. So we’ll see. My neurologist originally suspected post viral but now says I don’t even have Dysautonomia (which is ridiculous).

Well, kidney stones could be high calcium, no? Plus low vitamin D; could be the parathyroid? I don’t know; I’m purely speculating. But good you get on ok. I don’t have POTS but every day is pretty rough; just feel so weird and wonky all the time; can’t seem to ever get comfortable or relaxed.

I am. I’m thinking it might’ve been toxicity. But who knows. Just because of how it came about. No doctor thinks it’s autoimmune though I’ve never been tested (so not sure how they arrived at this). We’ll see. Any luck on your end?

Well. I’ve only had the two tests. They refused to do more tests. Sleep study went ok. I slept about the same. Literally just got back. I slept maybe 4.5 hours broken up into 2 sessions, with nonsensical dreams. Had to pee once. My sleep is so awful they had to schedule my study for 7 am. But I had work at 2 so got up @ 1 (even though I was up just before noon; just kind of sat there the rest of the time). Maybe they’ll have some answers. The burning sensations in my limbs didn’t arise at the time. But I noticed my teeth were so sore after I woke up. I am probably grinding them into dust. Still very unrefreshing sleep and can’t sleep more than 2 hrs at a time. Hopefully they have some insight.

I saw this randomly advertised in my hospital. https://njmetropain.com/burstdr-stimulation/ Not sure if anyone’s ever heard of it or if it could be beneficial to this community.

My sister works in a doctor’s office and occasionally bends the ears of the doctors about me. She said it could be my parathyroid. I do have this weird tender spot on my neck, very small. And the parathyroid is indeed very small. However, I’ve not read any connection between the symptoms I have and the symptoms of hyperparathyroidism. It’s a tricky thing to get tested because there’s a common criteria for it. I suppose it is also a culprit in somewhat idiopathic pains and symptoms, but it must vary from person to person. Besides, it would be something short of wishful thinking if it just happened to explain the range and severity of my symptoms. I only like it, I think, because you can just remove the impaired parathyroid and you start feeling better. But you sure as heck can’t remove your ANS. Or take a magic pill and poof you’re on your way to being normal again. I’m going to explore it, if only to give me some ray of hope. My calcium was 9.7 when tested but 10.1 is considered high, so I’m not really there. It’s pretty normal range. However— and there’s always a however —blood work is not the final say on it, as ultrasounds generally have the final word on whether you have a growth or not. So I’m now sitting here hoping I have a tumor on my parathyroid. How desperate I’ve gotten. I should also add my vitamin D is very low (~18; 33> is supposedly normal) —- which is why I’m borderline. High calcium (10.1>) and low vitamin D (~8 to ~33) is almost like you’re telegraphing this is what you have. I’d also be interested in knowing if anyone else has heard of other disorders or diseases that had been confused for Dysautonomia? (again, not saying hyperparathyroidism mimics Dysautonomia but maybe could be a consideration if you have these issues). Best, Zero

See. In the beginning I would walk 5-7 miles per day (which always made me suspicious I didn’t actually have POTS or anything close to it, but could believe Dysautonomia) and even then it didn’t tire me out. I would read entire books in a sitting; 300 pages a night some nights, never even getting remotely drowsy. When I first took mirtazipine I woke up so exhausted and fell asleep like 5 times the next day during the day. I was like huzzuh! But that slowly stopped working. All it does now is stop the weird tremor I had in my index finger. Because I think it’s also given to PD patients (not that I have that; I just read that somewhere). Then I tried Trazadone—-nada; made my leg feel restless. The Seroquil (sp?)—-same thing: more restless and awful ruminating. Then Remeron—same; nada; not even one more granule of grit from the sandman. The only thing that works is staying up until 6am when I’m tired of being up. Even then my sleep is short, vivid, and garbage. It usually takes me an hour to fall asleep too because I’m tossing and turning, or I get these awful jolts of electricity *right as I’m getting rested.* I wake up two hours later, three if I’m lucky, hoping it’s been 5 hours (which I’d kill for right now), and I’m usually in a state of derealization or coming out of sleep paralysis. It’s been dreadful. Zzzquill was working early on, as I was mostly popping up to pee, but even that has stopped. I have a sleep study in 4 hours (my usual bed time) and I’m just chilling in the ER waiting room. If anyone has tips or advice or stories of their sleep disorders, I’m all ears. I’m trying to really let go and just enjoy myself a bit ffs. I always had issues with my mortality but now I really know that banging my head against the wall doesn’t phase that wall one bit, nor the truth of our mortality. I’m not spiritual or religion; that has never been the issue. The issue was always the letting go of that imaginary control, that small “I” which longs to live forever, uninterrupted, without loss, only gain. I sometimes think of my inevitable demise at nighttime and I’ll just huff and puff about it; once, while falling asleep, I screamed out “No!” because the feeling of falling asleep, going unconscious, was always a paranoia of mine. I know this is contributing to my symptoms and possibly my sleep disorder, as I associate unconsciousness with death, but I honestly never had this issue before my autonomic issues; in fact, I could’ve been accused of hypersomnia even, capable of sleeping anywhere and everywhere for any length of time, without a care if it was class or a rock concert I paid $200 for (Bob Dylan). So I’m trying to relax, calm my system down, give it a break, as I wait for my sleep study in the ER and write a way too long post.

Would it help with constantly feeling thirsty? I constantly feel thirsty yet I’ve only perspired a few times since onset (and bizarrely most of that was in my palms and on the backs of my fingers—-so friggin weird). Anyways, you also said you had iron injections at one point, yes? What does that do?

Well. I hope we both somehow getter better—whatever that may be.

Also, has anything given you any relief between the times you were searching for answers and finding them? I mean, have you found any answers?

Thanks. I'm really trying to stay calm but it seems like every day or week there's something new to worry about. And the lack of sleep and constant reminder of loss of quality of life has yet to sink in. I've not fully come to grips with this. I mean, I never even ever truly accepted my mortality at any age. But this was cruel. For me, for you, for everyone on this site. We were all robbed and it's so upsetting. I'm still so close to the beginning of this I can almost taste the "old" me, whom I didn't even particularly like anyways. If there's one positive, I suppose, is I was always murky about the future anyhow. This just sort of distills the present a bit more, since now my health, the only constant, is pretty much undermined (at least until I find some answers). I have a doctor's appointment with a new PCP and am just considering pleading to be admitted so they can run the gamut of tests. I don't feel like I can go through any more days of not know and just constantly in a state of new-lows. Any suggestions and ideas are welcome to destress. Right now it's so tough because it's summer, my A/C literally just broke, and yesterday was the first real day the burning sensations have kicked in. Lucky me. Zer0

I also forgot to add: I have decreased sweating. Sorry about that. That's relatively important, I feel. But if not dysautonomia --- then what? What else mimics all of this? Or could? I don't have the most recent but they're: Potassium: 4.1 Calcium: 9.7 That's all I really have. All my bloodwork came back "normal" from others labs performed since. Is there something I should get tested? Or insist they test me for? I have a PCP coming on Tuesday with someone new.

I know no one can diagnose this online but I’m really worried I have MSA. I’m only 33 but this has been rapid. In four months I’ve basically had every symptom imaginable. I don’t have orthostatic issues, but my main complaints are very poor sleep — can’t get tired; only sleep for 2 hours max at a time; non-restorative sleep; vivid dreams — severe irritability, like, blowing up in short burst where I go all Mr Hyde; heat intolerance; something new is burning sensations in my hands, arms, and limbs; twitching in pretty much everywhere, but mostly my right arm; trouble focusing my vision (like on screens); depression; anxiety; loss of interest in most things (could just be preoccupation with my symptoms as well, and scared of something fatal); was frequently urinating early on but that has subsided; was getting up a lot during the night to urinate (but also subsided as I don’t sleep as it is); early on I had an issue in my index finger and thumb (like if I were typing it would tremor or be unsteady) but after taking Mirtazipine I think that slowed it down or whatever; gastric issues as well (slowed motility for sure, some bloating, but recently not that hungry at all); beginning to feel some weakness in arms and hands; dry eyes; dry mouth (and s very weird taste in mouth); nails look terrible. I had a regular TTT —- so no POTS or BP issues (for now) I had a “normal” EMG (no presence they said of neuromuscular or neuropathy—the non-SFN kind) I don’t know what else to do. My neurologist flat out said I don’t have Dysautonomia as did my PCP. But I have this awful feeling it’s MSA. Please help. Again, I know my anxiety/depression is making things worse but I wasn’t like this 4 months ago. I had none of these symptoms and things only seem like they’re getting worse! I don’t know what I’d do if I had MSA. I was already worried I had ALS with the fasciculations and twitching. Not sure how much more I can take. I’ve read the symptoms for MSA and I feel like I have it. Anywhere here have it? Or know a lot about it? So scared right now. Thank you in advance!

I’m very worried I have MSA. They say MSA also has with it poor sleep; vivid dreams. I’ve been so stressed out that this is fatal (like ALS). I am also starting to experience neuropathy in my hands and limbs and abdomen.

I had my TTT done at BIDMC. I'm not sure if that's all they have but it's all they did on me.

Not sure. I haven't been given a dysautonomic diagnoses (yet) but I have severe sleeping disorder as well: can't sleep; can't stay asleep; and all my sleep is awful. I also have insanely vivid dreams --- and will have them even if I have only slept for maybe 30 minutes. Like, I'll have dreams I can totally remember, second by second, as if there, even if I only doze off for a short while. And I sometimes feel as if my dreamworld is crossing over into my waking world --- and by that I mean it's difficult to tell when I'm falling asleep and when the dream is taking over. It's pretty much disrupted my entire life. I lost one job and am on the verge of losing this one. Do you have anything similiar to this? I don't have POTS or anything with my heart, but I do feel "wired" at times which probably means something in the sympathetic or parasympathetic system is way off. I have no clue how this came about as I was "fine" 4 months ago. Best of luck.

I've basically given up all hope. I don't even want answers at this point. I mean --- what is even the point? I have to stress out about finding the right doctors/diagnoses only to find out it's all bad news anyways. What a waste. Quality of life right now is nothing. I give up. I quit.

See. I don't fall asleep fast. I have to stay up very late. Then I sort of get up every hour or two. Lately, I've been having those same surges you just talked about. Oddly, I have no heart issues or BP issues. It's just I get this rush of adrenaline in my body and it feels like I have to go run a marathon but all I want to do is scream into my pillow to get the energy out of me, It's very annoying. I remember long ago I had this issue but never like this. Not getting any sleep is literally killing me.

My mother is now my proxy --- just in case --- but it's mostly just me running around making appointments and whatnot. Zer0