zerohours000

Spot on. The worst, however, I feel, are the snake oil salespeople selling “cures” for things. Like lupus. There ain’t no cure for that. Maybe in the future there will be but right now drinking green shakes isn’t the cure. I don’t trust pharmaceutical companies but I trust in the science behind them. Some people need those meds just like I need my gabapentin. The inter-patient fighting is dumb. We have this wonderful resource in each other’s experiences, this giant working brain called the internet; we should be using it to help each INDIVIDUAL get the best treatment for themselves, not use it to chastise others. I just want everyone, including myself, to be well (whatever version of that that may exist with resources possible). It’s daunting, and maybe in some other society we’d have a better shot, what with for-profit driving or limiting both medical research, but that ain’t here yet either.

Agreed. Would you mind linking to that FB group? I’m on the Dysautonomia International FB group for Massachusetts. And one on Reddit. But it’s so POTS-dominant that I probably only get a small % of useful tips and then ideas.

I haven’t had those tests yet. : /

Yes. I was hoping that’d be the case too. Especially given how non invasive a uMMA test is. But the problem is is I don’t have low b12 but high b12 (which I also heard could cause burning).

I can't drink coffee, tea, soda, alcohol, or do my favorite thing in the entire world --- smoke medicinal marijuana. Which tells me something is truly off in my ANS if I get shakes by doing the latter. I've basically been as clean as I've ever been over the last 4 months, except maybe eating kind of meh. Was juicing a lot but that waned.

I still have the burning. But I think it's because of nerve damage or something like that. I'm also at work right now under nothing but fluorescent lights. Today has been a very poor day for me, after a few not so poor days. The burning has never been this bad.

Injections or maybe the sunlingual pills could help.

True. I just wonder what all this is...and then I question why I'm even on these forums and other groups? I'm only 33 so I'm entirely sure what's up. Dysautonomia seemed to matched at the time, and even my first neuro said yes, then no, and then definitely no once the ttt came back. I have an appointment with a rheumatologist in 2 weeks so maybe they can shed some light on all of this. I'm secretly hoping it's something like functional b12 deficiency. My mother is extremely non-anemic b12 deficient, and everyone on my dad's side supposedly has this MTHFR gene mutation. But I don't know the full science behind that and have heard conflicting things about it. : (

What's crazy is I have a bunch of doctors saying I still don't have autonomic dysfunction. I even contacted the lady who runs Dysautonomia International, told her the neuro I saw who signed off on my tilt table test, and she said "No. He would not miss it." So if not autonomic dysfunction --- what??? I'm so confused. Thanks as always Winter.

I woke up today with the worst burning sensations all over my body. It was awful. My hands feel so darn weird. Not weak but like I definitely notice I'm having issues with certain fine skills with them. I was having two ok days and then this. The burning is everywhere and so annoying. I take gabapentin but doesn't seem like it's holding it at bay. Does anyone else have this burning all over? I get it in my toes, my hands, my forearms, my ears, my head/brain, ears, chest, face. It's so awful and stress obviously makes it worse but now it's affecting my ability to even type or write. Or just sit there peacefully. Is it neuropathy or something else? What makes this all so odd is I'm not a typical autonomic case. I don't have POTS, NCS, OH, etc. I have dismotility issues for sure, this stupid nerve pain/neuropathy, trouble sleeping, and of course my mood is soured tremendously. But to think I'm losing my motor functioning would be also terrible. It just never ends.

I was told my doctor to not take b12 methyl. My b12 is already above normal (926) but I suspect it’s because I’m not absorbing it due to an underlying autoimmune disease (not diagnosed). Early on I had a myriad of symptoms that fit b12 issues. I still do. There is something called Functional b12 Deficiency, but my PCP doesn’t think that’s it. But he couldn’t know this, I think, without running certain tests.

Yes. They’re more annoying than anything, but I’m slowly learning to tune them out and not exacerbate them by getting anxious or over-exerting myself.

I get it all the time. I also take magnesium. But I find it also helps wuth digestion. I get twitching in my quads, calves, face, ear, and arms. Maybe my butt sometimes too. De-stressing as much as possible helps. Keeping active as best possible (like, for distraction purposes). Getting enough sleep. Remembering to take my meds. And light exercise. I’m not sure if they’ve stopped but you can definitely decrease their frequency.

Thanks for the helpful advice. I see my rheumatologist on the 31st. I’ll ask for that. Very helpful. Hope your daughter gets the help she needs

I figured as much. I hear for many it's literally just like a switch that goes off. You go from active to inactive in a heart-beat. I was just emotionally hit, to say the least. One minute I'm holding down two jobs, commuting 4 hours a day, and the next I can barely clean my room or bother to bathe. I was never like this before. I suffered depression and anxiety, yes, but could always plop down and get 8-10 hours of sleep if it meant putting my head on a broken beer bottle for a pillow and newspapers for a blanket --- did not matter in the slightest. Now, even with "sleep hygiene," or so-called sedatives, I barely crack 2.5 hours of solid sleep. Weird. Indeed: the world goes on.

That's good. Hopefully you can be on the path to some alleviation. Congrats.

That makes sense. My PCP was flummoxed the very first day. And on our now 3rd visit, he just sort of scratches his head and shrugs. Not a good sign. But if the usual route bears no fruit I may look into Rochester or Vanderbilt. Once they exhaust "broad based" digging they're sort of out of their element. I'm sure that's why specialists exist but it looks like even they don't have the precise tools of this sort of thing either. I'm not sure if I'm piling up symptoms --- as some have come and gone in the last 4 months --- but there are definitely ones that have become steadier and more consistent (like the sleep, for instance, is guaranteed to be awful). I guess all I can do is wait.

Would you still recommend an autonomic clinic? When did you decided to go to such a clinic? Like, was there a threshold where your normal PCP just couldn’t handle or do much more for you?

You seem very knowledgeable in this area. What should I 100% ask for at my appointment? Thanks in advance

Did it come out of nowhere? Oddly, I feel at peace with the life in disarray outlook (I’ve no wife, gf, or children so my empathy goes out to you anyone coping with that additional emotional strain—though I imagine having kids is pleasant in that it literally gives you something to live for). If I could only sleep I think I could be more tolerant of all this. It’s been my biggest bugaboo. I don’t even mind the occasional pain or two. Or the scary neurological symptoms. Not getting sleep literally will kill anyone in the long run. I’ve always been very surly with a good sense of humor but I can’t find the funny in much of this. To be consistent, I guess I can’t be bitter, since I’ve made it a point of pride to live the opposite of others. But d*** if I don’t yearn for anything resembling normalcy right about now. Thanks for all your replies/support. I literally need this site like I need air.

Recently my hands get very cold. Not sure if that’s a marker of anything but they go cold pretty easily these days. I guess there’s so much I just don’t know.

I see. I just feel like I’m a dead man walking at this point. 🤷‍♂️ Im 33 and I just feel like this is it.

Sorry to hear that. I don’t have pain per se but I’ve no clue if it wil gradually come on and whatnot. Right now my eyes are burning a bit.

Thanks. I see them in a month. I figure cover my bases. I don’t have any pain or swelling but who knows. I think part of my anxiety is not knowing a) what’s going on and b) if it’s goih to worsen and show itself for what it is.

I had my SED rate checked by another doctor. I have my blood work through my patient site. Im trying not to worry but I just always go to the worst possible scenario, which isn’t helpful but I can’t help but think I have the fatal kind of Dysautonomia because I’m not developing the POTS or OH. Or eventually will. A wreck, basically. I started citalopram, which was my idea. I figure it couldn’t hurt.