RecipeForDisaster

It did. The arterial line and jugular cath are more important to me than the money, personallyI guess Systrom can deduce mitochondrial function using this test. He also really wanted me to do it. I’m relieved that I didn’t - mine would likely come up with the same findings as my friend. Basically, he offered her Mestinon if she wanted, and that was it, permanently. I’m already on it.

My friend had this. It’s pretty invasive, and yes, harder to find than a regular CPET. You do exercise hard, with catheters, so I think I’d be short of breath. She "failed"(notable findings) with very low preload during exercise, and didn’t end up having any recommendations for it in the end. She wanted me to also do the test, and I’m glad I didn’t, because she is back where she started. She has actual POTS and I don’t.

I would just love to have this done. I wanted to do the Daxor test, which is supposed to be at Yale, but no one wants to order it.

IVIG is helping my SFN only, so far. I definitely have other autoimmune disease (same, mystery, a few clues like ANA but nothing useful), and we hoped IVIG would accidentally fix those. Hopefully! I would not hesitate to have started IVIG for my SFN years before I did, because the damage might be milder.

That was the thing for me, the SFN started so slowly that I didn’t really notice it or see that it was not normal, and no way was it in my "top ten problems", so I never brought it up. It’s fairly bad now, but I still have many more pressing issues. Hopefully halting my nerve damage is worth using IVIG, but I am truly using IVIG to try to help those more critical issues, one of which is suspected severe autoimmune dysautonomia, even though I qualified for it using my SFN biopsy. That said, I’ve had a lot of challenges with IVIG, from financial ones to infusion reactions, BP drops, and aseptic meningitis.

It sounds very promising. I tried various LDN doses for a few years and didn’t have any improvement. I don’t think I’d do the biopsy without a plan for what happens if it’s positive, though.

I also drink olive brine - some drink pickle brine! Sometimes just a handful of flaky salt. I crave it.

It’s hard to get qualified for IVIG even if the biopsy is positive. I think having something come up on lab work like Washington University (FGFR3 for me - autoimmune) will help. It took me months to get my prior authorization approved, but IVIG is helping the neuropathy. Otherwise, I think they just use meds to help control the symptoms, and I don’t think anything but IVIG truly helps the neuropathy itself.

I’m not normally hyperadrenergic, but I always have this, usually more like 3am. A dream often sets it off. It’s horrible - I’m up for the day from it, because I get up around 5 normally, and I’d never get comfortable enough to get back to sleep that fast.

I did end up getting infusions, because no one wanted me having another reason to be weak, cold, and anemic. I tolerated them well and they got my levels over 100 when nothing else could.

People from many countries show up to see him! I know there are other people who are good with this stuff - and I guess I can’t be too excited, as it’s not like I’m doing well. It’s not him prescribing my IVIG, either. I do like him, but aside from giving me a label, it hasn’t been THAT helpful.

The Doppler lets them see how well perfused your brain is, and how that changes with position. It’s also aligned with exhaled CO2 readings in this case. My brain had 37% less circulation when I was upright (that fits into severe). I did drop my BP and raise my HR (which was already up), but not enough to get a diagnosis from those alone. That said, I always say that during my TTTs, I am not myself at all - off my meds, fighting traffic and navigation for the 2 hour trip up, parking, near misses, etc. I hate big cities, so I always show up way "better" than my baseline. I promise that if I could really have a TTT done at home, it’d be telling.

Yeah, I tried many doses at different times for a long time. I did not want to give up. I am not sure if it was that or as a cerebral vasodilator(I think the latter). I definitely need that! My heart pounding is bad enough without any meds exacerbating it. Same for my insomnia, sigh. I’d still try the Nimotop but I don’t think anyone wants to write for it. That’s funny, I have meds that I feel that way about, but midodrine isn’t one of them! I have side effects starting at 5mg. It does help, but I have to take tiny doses hourly or so in order to get enough to have any benefit. It’s pretty annoying. I wish it was extended release, so I could take a tiny dose of that one or two times a day. I do know what you mean, though, about the meds that don’t do anything bad OR good. Yes, wouldn’t that be great? I’m always happy to be a Guinea pig for that reason. I hope to help others.

He has been trying galantamine - I had trouble tolerating it and didn’t feel a big difference, but I didn’t get my dose up very high. I know it made my insomnia worse, even taking it in the morning, and I think it made the pounding worse. I had high hopes for it. Some people get a calcium channel blocker, like Nimotop. I think my BP is too low.

That’s really neat! I’m the same, I used to edit, but haven’t in forever.

I was glad to get the HYCH label so I’d have -something- other than generic dysautonomia . I’m kind of amazed that the technology is expensive enough to warrant a grant, but I’m glad more doctors will be able to do this. I probably would have had an inconclusive TTT without the Doppler.

Very interesting! I’d get tested if they had it in Boston. I know I do much worse after I eat literally anything…

Done! Seems like a well designed survey. I was impressed at the number of choices offered.

I’ve had my whole genome sequenced, and there is a novel finding of unknown significance in there, related to familial dysautonomia. My mother and sister have some elements of my health problems, too. I was told the same thing - it would have been severe enough to be discovered by my teens if it was FD. But it’s interesting. They are going to sequence me again twice a year in case they learn more about these genes.

I might be creative, but if I wasn’t, I’d be doing even worse I do things that are not so beautiful, like that one. You should see my couch desk. Velcro is my friend.

Gotta do what you gotta do! I’m looking into making a foot hammock for my desk - I work on my couch, and I noticed foot hammocks when looking for my ottoman. I think that’d be helpful. You’d be amazed at all of the adaptations I’ve made! My IV backpack is multifunctional, nothing like the basic bag I was given.

Oh yes, my mom has one of those! I ordered an inflatable "patio" ottoman from Amazon for now. We’ll see how it goes. I know it’ll be a huge help to be able to put my feet up wherever I’m sitting.

I sit in meetings or waiting rooms a lot, and get very uncomfortable when my feet are not up. I was thinking that some kind of foldable or inflatable ottoman would be great, as long as it didn’t look too weird in a meeting. Does anyone elevate their feet in public and how do you do it?

My neurologist cheerfully told me "you’ll get aseptic meningitis every time now". I thought we had a regimen figured out (first time with this product, with a rest day between treatment day, tons of hydration, and still with IV premeds), but this time, it just hit me a little later and maybe a bit less badly. I haven’t tried oral steroids for it before, but the longest it’s lasted without them has been a week. I think my dysautonomia/low BP feels better, but I’m so sleep deprived (up since 2:30am), it’s hard to tell. Hopefully tomorrow will be a clearer day. If it does work, good luck to me convincing people I need steroids for this! That is a very interesting herb. I think I researched it before. I hope it’s the magic bullet we are hoping for!

Totally me too, just different meds. They help, but not enough. I can have uncomfortable pounding when my HR is in the 60s and am not anxious at all.