zerohours000

@valizThanks for sharing. I have a constant twitching in my pinky and finger finger where they both twitch inward. I’m just hoping it’s not early onset Parkinson’s disease. Hope you’re doing better.

Thanks. I had an EMG in June — normal. I guess I’m just worried about Parkinson’s. But I’ve alsi heard adult Celiacs can present neurologically. Money neuro already said it was BFS and I basically believe them. So it’s just the other one I’m concerned about.

I don’t fall asleep until like 3:30 am. Thx. Im trying buy it’s so hard.

My recent doctor told me he is leaning either rheumatological or neuromuscular. Neither sound particularly good. I have never been diagnosed with Dysautonomia so this is not a shock I suppose. My most recent symptoms are these weird muscular jerks before going to sleep, and only when going to sleep. But I do have a twitch now in my left hand hand, in my ring and pinky finger. A twitch in the sense that it bends inward to the palm, so twitches towards the palm. Could be nothing, overuse of my phone, or like the doctor said—neuromuscular. All very depressing. I’m only 33 and I feel just so sad like I already died. Sorry to be a bummer. Just feeling alone and bummed.

Yes. It’s hard to know what’s causing what.

Sorry to hear that. I don’t get tremors per se. I do feel like there’s an internal trembling or something. But I get a lot of jerks and twitches as well.

@EchoPernicious Anemia

@EchoYes---because my mother doesn't have PA but is deficient. Similarly, many with autoimmune are deficient. It's an easy fix but not so easy to catch. For example, I have HIGH b12 which could indicate my active b12 isn't being used whatsoever. But we'll see...

My suspicion is that it's from some vitamin deficiency or possibly the dysautonomia itself --- even though everyone says it's not dysautonomia. So I'm very confused.

How do you figure out if you cant absorb it?

Does anyone else get like limb and body jerks? Especially while trying to fall asleep? I get them in my fingers a lot and then almost everywhere when trying to rest. Very weird.

Just wanted to add this because it specifically mentions the autonomic system: https://www.livescience.com/56121-brainwave-balancing-hirrem-migraines.html

That’s a smart adjustment strategy!

Awesome. Looks great!

@EchoYes. It really is up in the air right now. Some things for me have gotten better (like sleep recently) but some have gotten slightly worse (like decreased stomach motility). So it’s difficult to tell. I’ll definitely let you know about HIRREM if I find a provider or purchase it outright. I just know it’s available in November.

@EchoOkie doke. No worries. I had a “normal” TTT; had literally one day where I maybe had low BP and got shakes but it’s evened out and I’ve henceforth have not needed to hydrate a lot nor do I wear those compression stockings or do anything to compensate. That’s interesting about the pupil dilation though. I haven’t been to an optometrist since this all started. Be curious as to what they’d say. The HIRREM device will be out in November I was reading. I might try and either get one or see if it’s offered as treatment in my state. Sounds promising. I haven’t found any good answers from doctors but something is up. Thanks for the reply.

@EchoCan I ask what your symptoms are? I don't have POTS, OH, NCS --- or any of the heart/syncope/orthostatic issues. So I'm curious as to what others without those have for symptoms and what they've done for treatment? Thanks in advance. And I'll definitely look into this treatment as well. I should also add that, as of yet, I do not have any kind of diagnosis. In fact, I've been told by two neurologists that I do not have dysautonomia. Which could very well be the case, I suppose. I just don't know yet.

Sorry to hear that. I know I get warm very quickly. I was always a bit on the jumpy side but I’m not sure to the degree you’re describing. Do you have any stomach issues?

That’s so interesting. PTSD was brought up to me too. May I ask what kind of symptoms you have? I’m taking Celexa right now as a sort of experiment for myself. I was on it before. And can you PM me the doctor in Hartford? Thx.

Sorry to hear that. Falling down is so tough on the elderly; like, probably a top ten injury. Hope she’s comfortable at least

LOL! I do so miss it very much.

I can sort of vouch for THC. The problem is this: with THC or CBD, you have the same issues wuth patient physiology; what works for one may not work for another and so forth. I used to be a recreational smoker but there’s no way I can now. Pure CBD oil works a bit but it depends on where you get it and who makes it. It’s regulated here in MA but frankly that doesn’t mean much. CBD is marketed as another miracle substance because there are many in chronic pain for whom opioids might not be an option or simply it’s oversold as a miracle tonics used to, long ago. It’s overpriced and still thoroughly under-regulated. But I hope it’s helping your MIL

Yikes. I mean. There is something to the idea of “all natural” but not at the cellular level. Like my aunt truly believes in naturopathic medicine. But she is also not suffering like some on here suffer. Her symptoms are somewhat like mine, minus the muscle twitches and burning. She has sleep issues, stomach issues, and muscle cramping and pains. She doesn’t have OI or POTS. And I think she takes that for granted a bit as to the extent naturopathy is valid.

I don’t have that luxury either. Diet and exercise are good regardless. But to be a cure-all or even a preventative cure-some is a wide net to cast overva systemic problem, which affects everyone differently. When foodies subscribe to diet as a cure-all they entirely overlook industrial farming practices generally. For example, farms overfarm and the soil is depleted and thus are their crops are. Yes, processed food is bad but unless one is growing their own food, it’s likely to be depleted as well.

My aunt is into a lot of quackery. She has issues with her ANS and keeps saying I need a “functional doctor.” I was sad that Cleveland Clinic even added a functional medication sector. Which to me is new age hokum. I’m not saying it doesn’t have some benefit but it’s not science and it’s not medicine.