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Everything posted by RecipeForDisaster

  1. I knew about my severe B12 deficiency way before I went down the dysautonomia road. I was almost excited when they found it because I hoped it was the key to fixing my issues. I tried weekly shots but I got worse because not all of us can utilize cyanocobalamin. The same happened with the nasal spray. Sublingual methylcobalamin in high doses brought my levels up.... I got better in some respects (numbness and tingling, mostly) but a lot of my issues are just as bad now. I was low for many years, being vegetarian and probably also having a lack of intrinsic factor (hereditary, I have pernicious
  2. Normally other labs are done, too, like iron binding capacity and saturation. That way they can tell if you have it on board, can absorb it, etc. In my case I can see that my saturation is high, so I am absorbing it okay... just not enough or I am losing it. Ferrous sulfate isn't the best (easily tolerated and absorbed) form but I tolerate it and absorb it okay, personally. i do think PPIs would make it harder to absorb iron (and a lot of other nutrients). i guess I will let the hematologist go for the infusions next time-good to know.
  3. Not anemic but also had very low ferritin at 6... can't get the level above 40 no matter what (325mg ferrous sulfate 3 times daily with acidic foods and no coffee) and wonder if I should do the IV form. I hear the infusion makes you feel really sick... but I'm curious whether increasing my ferritin would help me feel better.
  4. Interesting... I am also vegetarian and had very low vitamin d (11), b12, (120), and ferritin (6). I do think the extremely low b12 might have caused my potential autonomic neuropathy (I had horrible symptoms at first, paresthesias, etc.) but what does that change for me now? After heavy sublingual b12 replacement my levels are fine now. I did shots for awhile but the form I need (methyl, not cyano) is not available that way and sublingual works fine. Ferritin is still an issue... i got to 53 in 2016 after taking 325mg 3 times daily for a long time, but I'm stuck at 40 for the past 6 months an
  5. That's interesting, I get this too. It's like I'm just too weak to talk. I never connected it, just thought it was one of my weren't features that sometimes I have no voice for no reason.
  6. Yes this is one of my worst symptoms. Metoprolol dulls it somewhat, but I also have a lot of annoying PVCs that get worse if i take more than 25mg. My usual palpitations are continuous and very annoying when trying to sleep.
  7. Yes, I have no diagnosis, but I almost always feel this way. Sometimes a cocktail of meds and compression will alleviate it to an extent, but most powerful is a liter of IV saline. I am pretty well used to it, but it IS distracting and it worries others when I collapse into a wall, am wobbly, etc. knock on wood, I haven't actually passed out since I have been using these meds and fluids. i used to be quite athletic-gymnastics, figure skating and hockey, basketball, horseback riding from a young age. Now I try to keep kayaking, horseback riding, and hiking as much as I can, but it's
  8. Yes, I'd be very curious about my blood volume. Hopefully I can get the testing done. I do have some clear dysautnomia symptoms but not a particular pattern for diagnosis. I have awful temperature regulation and sweating, for instance. Maybe that's just from being in shock? Hypovolemic shock would explain a lot, really.
  9. Salt and water didn't help me enough, midodrine is somewhat helpful, and so are compression stockings and mestinon. IV fluids help more than anything but I haven't been able to feel OK in years despite all of this. I think that's true of me also, my BP is just baseline low for "no reason" and that's responsible for most of my problems. I used to be hypertensive as a teen and into my 20s so I don't naturally have a low BP and do okay with it, as some do.
  10. I have very similar symptoms! Metoprolol does help me somewhat without lowering my BP. I hope you get it figured out-I would love to know how it goes! I haven't tried florinef either. My neurologist said he had a patient just like me, who came from Hawaii to Boston for treatment. He couldn't figure out what was wrong with her either
  11. I have these, too, and my BP isn't much better when I am lying down. I also have both types of sleep apnea and use a CPAP which gives reports. I have a pulse ox which is somewhat uncomfortable to keep on my finger all night.... I had the overnight oximetry study professionally done and that night I literally never got to sleep, i was not doing well enough to ever fall asleep. So, my results were fine because I was awake! I've used mine a couple of times and gotten borderline results, but I wasn't sleeping soundly or for very long when I wore it. I figure I can present the recordings to one of
  12. I'm really sure it's low, partly because of my response to IV fluids. I haven't had it checked... I am going to ask but I bet no doctor wants to order the testing. It's a few hours away at Yale. I tell doctors that the best way to describe my overall feeling is that all of my blood is the floor and I've had too much caffeine (heart pounding wise).
  13. You actually can bathe. The monitor itself comes off any time, the electrodes can stay on in water or be switched out. I didn't have much trouble with mine other than skin irritation an drew sometimes signal issues.
  14. For me, I don't know if my BP dropped enough. I just got labeled dysautonomia. My BP is low all the time, it does vary with activity and position (and does not increase when I stand as it should) but I don't even have a good BP lying down. It's too low to allow me to stand and walk without blacking out, so I am orthostatic but I believe it's mostly because I am just too hypotensive to do those things. That's why I wonder what is really wrong with me.
  15. This resonates with me. What DOES help you? Do you feel your complaints are taken as valid by clinicians, without a diagnosis? My TTTs came up inconclusive as well, and meds aren't super helpful. They are better than nothing, but IV fluids are the thing that helps most.
  16. I know my DO doesn't think it's all in my head. I don't think most of my doctors do (one cardiologist says it may be my minds response to my illness making things worse, but even that is not the case) but they do think I can live with it. Even when I'm on the floor. i have few friends myself. Maybe one or two I share this stuff with. The biopsies definifely made me feel completely different than i than I normally would. So stupid. My BP was high for me.
  17. I have that same inner conflict. Do I mention this odd, seemingly unrelated symptom to potentially help in diagnosis? That's awful about your family. I'm glad mine doesn't know anything. I'm pretty good at faking being okay, I guess! My TTTs haven't come up with much that is useful, but the first one was done wrong, and then second began with very painful and scary biopsies which undoubtedly changed my physiology.
  18. Sometimes I come home from appointments extremely miserable. Most of the time I force myself to stay positive. You're exactly right, better to pretend we are really okay than that they don't know what is going on or what to do about it. Once I saw my cardiologist and told him I wasn't up to eating or walking without wobbling over for the past 5 days. He wrote in his summary "glad you're doing better". Being here is is helpful because I hardly tell anyone about this. It's too weird, sketchy/fake sounding, and hard to see. I tell people who have seen me pass out or coll
  19. I have told most of my doctors that anyone else in my body would be staying in bed 24/7. I still keep trying to stay active and work a few days per week. I'm grateful that I have a few tools I can use to get a little improvement or avoid a crash, but overall I still feel terrible all of the time and something as simple as stirring batter makes me a lot worse. I keep doing everything, though. I really only have that one doctor who is adventurous in trying new stuff. It is only thanks to him that I have IV saline.
  20. Interestingly, my helpful doctor is a DO. He's a hematologist but I do have known hematology issues in addition to all of the undiagnosed stuff. i do try supplements and vitamins but haven't had much effect so far. Quality of life... I don't think doctors have a problem with us having zero. I usually push through and do okay, but there's a tremendous amount of compromise and lying to myself involved.
  21. We'll see. I've only seen this guy twice but I do think he is caring. I'm very glad to have him and he does try to help even though I'm pretty sure he's not my primary need in a specialist. That said, I've thought that about my other doctors, all of whom have basically given up or just told me to get used to it, that we may never have an answer. I even think there is a reason that my baseline temp is around 97.0 (thyroid had been checked, but maybe not thoroughly?) and have been told we won't figure that out. My first cardiologist even told me avoid any exertion to the point of not
  22. I feel your frustration, although i find help in a lot of the POTS discussions even if i don't have it. Your message resonates with me very much. I know I don't have POTS and I have a lot wrong with me but no diagnosis at all. I'm still working 3 days per week and pushing through the best I can. I'm grateful I have finally obtained treatment but it would be nice to have a name. I think having dysautonomia without POTS is so hard to diagnose, because as misunderstood/unfamiliar as POTS is, something more vague without clear diagnostics is much more likely to be missed/dismissed. i have only tol
  23. I totally agree and if you show up at an ER hypotensive one of the first things they will do is give you IV fluids. It's absurd that doctors are so afraid of it for outpatients. It's pretty hard to start an IV on yourself even just because of having enough hands. I had a professional license to do so and taught others to for many years. There could definitely be complications from lack of experience. I can't have a port (yes that's a minor surgical procedure) or PICC line, so I just keep getting new peripheral IVs. I am sure I would do well on continuous, but unless I
  24. Yeah, it's sort of like, well, you are still alive with this BP so I'm not gonna worry about it. Even when I can't eat, sleep, walk, etc. because I'm in shock. I now have one doctor who will think outside the box and promised he won't give up on me until we figure this out. It's gonna be a long process but he has already found some interesting stuff in my labs that was never uncovered. I wouldn't have these fluids if not for him. Honestly, I don't even know what specialty I should be falling into. My first visit with the autonomic neurologist in Boston, who wrote many studies I hav
  25. I was afraid of the neurological and digestive side effects, mostly. Some described tongue spasms, and I have enough tight muscle problems now. If you look at the side effect profile it's fairly scary... sweating, drooling, etc. I really didn't get anything except that I do sweat a little if i "should" (it's hot or I am very stressed) where I wouldn't before. i had to ask about 6 doctors before I got the order for IV fluids at home. A few aid I didn't need it if I could drink (sigh), a few said I could come in and get them administered or prescribed -when I needed them- which of co
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