zerohours000

What is your sleep like? I have chronic insomnia, non-restorative sleep, and hyper-arousal, where I wake up every 1-2 hours. I basically wake up right during REM and therefore never get any actual sleep. I have a rheumatologist appointment next week and am not really sure what to bring her --- except my laundry list of symptoms. Some of them subsided but the big ones are gastroparesis, sleep disorder, pains in calves, minor fasciculations, heat intolerance and inability to perspire normally. Hopefully you get the answers you need. And eventually the treatment. My PCP still thinks it's psychological and my neurologist gave up on me entirely. Something is wrong in my system(s) and I just want answers and some relief if possible. Best, Zer0

All good suggestions. I'll look into all of that right away. I still have a few appointments coming up plus switching my neurologist. I am in the US and there are autonomic centers in Boston. So trying to get to those places. I know I don't have POTS but something is truly amiss. I have a history of depression and anxiety but I just know it's not that. If those caused all these symptoms --- I would get down on my hands and knees and thank Zeus, because then I know it could be managed with some degree of ease. But this seems more nebulous; the symptoms less easy to merely pin on the mental. My doctors are total incompetents. They're lazy, ignorant., and even when presented with new information re: dysautonomia, they shrug their shoulders and defer to their own pathetic (in)expertise. The most frustrating part is them not listening to me, the patient, as if their degrees make them gods incapable of hearing the audible cries from their lowly subjects (us). Thanks for the suggestions though. Best, Zer0

I have a rheumatologist appointment in 2 weeks. My doctors thus far have said this is all in "the brain" and are leaving it up to my psychiatrists. I can't understand why they won't even test me or consider my concerns. They keep telling me my symptoms don't fit this or that disease. I"m beside myself and at the point of giving up.

My understanding is that it could help factor in a co-existing condition to it.

Yeah. I'm dumping the doctors who insist it's purely psychological. They're absolutely wrong, I feel. How is that they can run zero tests and come to that conclusion yet when I ask for tests they just smugly shake their heads and say "Nope. Waste of time." ? It's absurd. I'm going absolutely out of my d*** mind. I've never been so enraged and beside myself. No one is listening to me and no one will even look at the literature I bring them, to show to their own ignorant faces --- like pages from "The Dysautonomia Project." They're so ignorant. So very ignorant. Zer0

I see. Well. I have a rheumatologist appointment in exactly 2 weeks. I'm scheduling an end-around my PCP. I can just log-in to my patient portal and schedule an appointment with another doctor for lab work. So that's what I'm going to do. Mine were on my hands and feet. They originally thought it was hand, foot and mouth. Then they thought it was syphilis. I think I vaguely recall getting some on my chest and abdomen. These doctors are so influenced by other factors --- especially their own biases --- that it's a wonder anyone ever gets healthy in their care. I broke down in his office because I told him my life has been ruined and devastated by this. He still tried to get me to focus ONLY on the psychological component. They don't seem to get it: I"m psychologically defeated and disturbed because a.) my unexplained symptoms and b.) my lack of care by so-called care professionals. Thanks for your feedback. Zer0

Out of curiosity, did you red spots go away? And where did you get them?

I'm not sure what those would be. I answered 0 to all of their queries: "On a scale of 1-10, do you feel dizzy?" "On a scale of 1-10, do you feel nauseous?" "One a scale of 1-10, do you feel on the verge of passing out?" "On the scale of 1-10, do you feel flush, hot, etc?" I forgot the last question, but it was basically the same, 0. The only symptoms I had were the ones I've been having: gastroparesis, fasciculations (twitching), issues with perspiration, sleep disorder, etc. But none of that is surely going to show up on a Tilt Table Test. I have no issues with BP or HR. I take it from time to time now and it's never out of bounds. I took it last night and it was 72 sitting and 72 standing. 130/80 both times, basically. My question, though, is if the tilt table test itself can simply rule out dysautonomia ipso facto? Thank you for your concern. Zer0

This has probably been answered before --- but I was at my PCP today, trying to get an ANA test, but was rebutted because they told me dysautonomia --- and my symptoms --- rule out whatever I was worried about. How? Because a normal tilt table test absolutely means I don't have dysautonomia (and that my constellation of symptoms don't necessarily point to any of the co-existing conditions). Is this true? Basically, his argument was: "The tilt table test can't prove what kind of dysautonomia you have but can rule it out entirely." Again --- is this true? Thanks in advance. I'm beside myself. I can't get these doctors to listen to me. They keep telling me it's all in my head. It's maddening. Zer0

I waited 2 hours to see my doctor today to only again tell me 1.) my normal tilt table test = no dysautonomia and 2.) wouldn't give me an ANA test. I am so upset.

I’ll try anything at this point. As you can tell, it’s almost 4am here. My insomnia is so out of control.

I really hope you the best. I should probably get re-tested once I see my new neurologist. I also heard there were different tilt tests after reading the book The Dysautonomia Project. My biggest things right now are just lack of sleep, weird body temp things, dry eyes, some stomach dismotility. I was working two jobs and had to quit the primary one. There was no way to do it. I just took my HR standing and sitting and they were both 72.

Well. I have to say that I do believe I don’t have POTS. As my HR never is high; though I’ve had some palpitations. My hunch is autoimmune underlying autonomic dysfunction. My PCP is also lazily suggesting anxiety and trying to convince me this is all stemming directly from my brain misfiring. While that may be—-what poor scientists they are to not run any tests on me. Thank you for your well wishes. Hope you feel better as well, and your son too. This has been a nightmare. Best, Zer0

Nope. None of that. I’m moving in from this neurologist. I’m not even sure how to get those tests.

I have no clue. When I raise the issue of anything he keeps saying “the etiology doesn’t match.” And they’ve done just basic blood work. What do you suggest?

Just curious if anyone had this: Began as if I felt like I was developing the flu (but no fever, no nausea, just like I was coming down with something). It was followed by pain in my groin, and excuse the graphic description, but pain going to the tip of my private. (These pains lasted maybe 4-8 weeks have not returned). There were diffuse pains as well, little ones in my toes or fingers, followed shortly by the inability to fall asleep until almost 3am; then heat intolerance shortly followed. I then developed these red spots on hands and feet for, again, 4-8 weeks, then followed by very dry hands and feet (and the spots are gone and most of the dryness). There was also weird heading of sweat on my palms and backs of my fingers (which I also think has subsided a bit, though I still have difficulty perspiring). I of course have had other symptoms but that’s how I recall it happening: with a non-flu “flu.” Followed by seemingly erratic symptoms. Anyone have anything similar or know of what the impetus could’ve been? My PCP swears it’s not autoimmune, Lyme, diabetes, or other known etiologies. He is, as I’m sure you’ve all experienced, convinced it’s either anxiety or idiopathic at worst. Thanks in advance. Hope everyone is well. Zer0

I am indeed pursuing those avenues now, even though my PCP seems to think it’s all anxiety and/or depression—- which is also frustrating. This all started as just feeling like I was coming down with the flu, then pains everywhere, especially my left groin, and then red spots developing in hands and feet (which went away), then various symptoms. The onset was peculiar to say the least.

Thanks for the encouragement. I have an appointment with sleep doctor in Tuesday. Scheduling rheumatologist soon. And even have infectious disease doctor on 20th. Will keep everyone updated.

Yes. I let her have it though. She really made me angry with her dismissive attitude and condescending tone, as if I were incapable of grasping her otherwise cryptic (mis)communications.

I am seeking out a 2nd opinion next week. And I haven’t seen a rheumatologist yet. But thanks for the advice. My PCP wants to hang every single one of my symptoms on the mental aspect. It’s very frustrating.

Also, I found this doctor to be extremely condescending. Her arrogance was only matched by her lack of humility when she found out her initial diagnosis was wrong.

Hi all. I'm still new to this forum, but I'm not sure if I even belong here. My neurologist flat out told me: "You DO NOT have dysautonomia." Here is her full response to me: "I feel that you may not be hearing things and retaining them well due to the sleep deficit. I will reiterate again what we discussed on the phone last week. I recommend that you keep this in your files to refer back to if you can't remember well. You have multiple symptoms involving multiple systems. Often we see this with dysautonomia so we tested you for that with the tilt table testing which was negative. You do NOT have dysautonomia. You also has muscle symptoms so we tested the muscle with EMG which also was normal. At this time we have found nothing significant neurologically to diagnose you with. I recommended that you see the sleep specialist to have them improve your sleep to see if that helps with all of your other symptoms. Best," Now, I am seeing sleep specialist next week, so maybe they can shed some light on all of this. I still have: heat intolerance (especially in the sun, it makes my skin feel like it's burning up), decreased perspiration, lack of sleep, decreased stomach motility (gastroparesis), depression, anxiety, fasiculations, blurred vision, muscle aches, occasional dry eyes. Is it possible to still have dysautonomia without POTS? Or does the tilt table test rule out other dysautonomias? I'm getting a second opinion on all of this. But I just can't believe after two tests --- after diagnosing me with ZERO tests on our first meeting --- she then comes back with that. I mean, I'd be happy if it weren't dysautonomia, obviously, but then what? Anyone have any ideas? Any input is invaluable. Especially on what to do next. Best, Zer0

Can you explain what it feels like? I've been told I have neuropathy but I was also just told my tilt table test was "normal" and don't have POTS. I was having issues with my left hand about a month ago --- tingling and my index and thumb would shake a bit --- but took mirtazapine and it's gone. My neuro said that was neuroapathy but I never had any pain per se in that hand, just the tingling and unsteady index finger. Hope you feel better. Zer0

*UPDATE* My tests came back and my neurologist doesn't seem to think I have POTS. This doesn't mean I don't have dysautonomia but now I"m more confused than ever. I was also having symptoms after the test so who knows. Did anyone else have a "normal" TTT and still wind up having POTS? I mean...did I get this test too early?

Hopefully you're right. I've had so many new symptoms pop up that it's tough to tell what's getting better and what's simply the same. The twitching in my arm and elsewhere is fairly new, for example (and extremely annoying). I'll ask my neuro about that flourdicortisone. Thanks again, Zer0