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Everything posted by dkd

  1. I had very low vit D (8). Was given a prescription dosage (50,000 IU) once a week for 6 or 8 weeks. My level came up to 44. I didn't notice any difference in how I felt. So, I really don't feel like it was related to my dysautonomia. But hey, who knows???
  2. I know how you feel. I've had two different neurologists totally contradict each other and some of my tests contradict each other. It's very frustrating and you don't know which one to believe. I've spent years thinking that one thing was wrong and then another doc disagree with that, so that know I don't know what to believe. I keep thinking I'll get a third opinion, but I haven't yet. Now, in your case, a possible brain tumor sounds very serious, so if you don't get any answers soon, please do go for another opinion. Best wishes to you!!
  3. I haven't been diagnosed with high adrenaline, but I do get little surges--when the phone rings, when my hubby snores, etc. But I'm wondering is there anything that can be done about it anyway?? I'm thinking all the meds are like CNS depressants and I can't go around stoned all day-lol. So, I don't know if I should persue that avenue or not? Anyone know of meds that don't make you feel out of it? I'm on a beta blocker which helps the high heart rate, but I sill have other 'anxiety' type symptoms, even though I don't have anxiety (the adrenaline surges, numbness and tingling on face, pressure in chest and throat). The only other med that I tried was Lexapro and it made my symptoms worse. Thanks!
  4. Yes, if you have strep you need to go to the doctor. You don't want to try to wait it out. I have a friend who's son had strep and she didn't know it and he wound up with heart valve damage. A 'good' doctor's office will do a culture as a back up to the test. If the test is negative, they should do a culture. But ask to be sure!! I've never had strep as an adult, but I've heard it described as feeling like you have ground glass in your throat. Hope you feel better soon!
  5. No results yet. I did better on it than I thought though. The very first one I did a couple of years ago, prior to dysautonomia diagnosis, was inconclusive because as soon as I stood up, my HR went to 135 and it only took a few minutes of walking to get to my target HR of 175. Yesterday, it only went to 100 when I stood and took several minutes to get to my target--10 or 15 min. So, I guess that's a good thing. I was worried that it would be like the first one because being off my beta blocker yesterday, when I got out of the shower my HR was 140. That made me realize that I really need the beta blocker to keep my HR down. Maybe I'll hear something today??
  6. That was my thinking also, but wanted a second opinion. Thank you!!
  7. Hi all, I was told to not take my beta blocker for 48 hrs, and no caffeine for 12 hrs, but I forgot to ask if compression socks would make a difference in the results of the test. Anyone know?? Thanks!!
  8. I saw this episode not too long ago. I've been watching reruns of the Golden Girls and find it to be hilarious!!
  9. Mean platelet volume measures the size of your platelets. If it's low, they're smaller than 'normal', if it's high, they are bigger. Nothing to worry about really.
  10. Lexapro didn't send me to the ER. but I felt awful after taking the first dose. I did not continue it. I've read some people say that you have to get used to it, but I wasn't willing to give it a chance. It made my symptoms soooo much worse.
  11. I was wondering how your appointments went. So sorry that it's scary but hopefully they are on the track to getting you better. I know my fear is thinking that I "just" have dysautonomia but there is something else majorly wrong going on. Sending hugs, prayers and well wishes to you!
  12. No, it is not normal. And I'm hoping you get to see an electrophysiologist. Mine looked at my holter monitor results and asked what I was doing when my HR was 140, and it was when I was washing my hair. I said "should someone's HR be that high when when they're washing their hair" and he said no. The regular cardiologist that I had seen a few months before just told me I was out of shape and needed to exercise more. Yours is a lot worse, so I can't imagine them thinking that you're normal. I really hope you get some answers soon.
  13. Seems like you need a full workup by the cardiologist. You might be helped by having oxygen but you need to figure out why your heart is not getting the oxygen to where it needs to go. The 30th is just next week--hang in there.
  14. Maybe they won't stop yours? Guess you'll just have to wait and see what happens. Do you know what your heart rate does when your oxygen drops? I'm not sure you can correlate it anyway??? Hope you get some answers soon!
  15. For me, they calculated my target heart rate, 175, and let me go until I hit that HR, which didn't take very long--just a few minutes of walking. I was at 135 when they hooked me up. But they will let you run if it takes that to get your HR up.
  16. Have you tried a beta blocker? I tried three different ones before I settled on one that didn't make me too tired. It definitely keeps my HR down so that my blood pressure stays more normal. But according to my TTT, my heart rate goes up and blood pressure drops, or visa versa, not sure which one comes first.
  17. I'm in that 80% that does not know. After 10 different doctors and $7000 in deductibles, I gave up on searching for an answer. I was put on beta blocker/midodrine by EP cardiologist and feel a little better. At least my HR is under control. Sometimes I think about trying to figure it out again, but I have another $5000 deductible for this year. I've always had a higher-ish resting heart rate, but it really seemed to get worse after a flu shot in 2010. I also had neurological symptoms start then (nerve pain, numbness, tingling).
  18. They will probably do an EKG to check your heart rhythm and hopefully schedule to do a tilt table test. Maybe a Holter monitor for a few days also. It is a good idea to write everything down that you want to present as symptoms in case you forget something. I always get back to my car after the appointment and remember something that I meant to say or ask about. An electrophyisiologist (EP) is a cardiologist who specializes in heart rhythm so hopefully you'll get to see one of those. Some cardio testing I've had: several EKGs, 48 hr holter monitor, treadmill stress test, nuclear stress test, transesophogeal echocardiogram, tilt table test. I think that's all--that's quite enough-haha!! Good luck and I hope it's a productive appointment. Let us know!!
  19. I have tingling in my left hand (index and middle fingers), left foot, and left side of my lips and nose. I have not had any testing for neuropathy. A 'consulting' neurologist said he does see tingling on one side of the body in some women and there's really nothing that they can do about it and not to worry about it. Easy for him to say!! At first I was worried about TIA/stroke or MS and he did not think I had either of those problems (brain MRI normal). I left there with the feeling that, well, I guess it's going to get better or it's going to get worse--guess there's nothing I can do about it. It is very annoying, especially on the face. I hope you find some relief!!
  20. I know you're frustrated because I've been there myself. I even told my GP that I needed someone to look at the whole picture and she just told me she'd sent me to a specialist for whatever symptom is bothering me, so she really didn't have a clue. That said, I think I've told you before, an electrophysiologist is who diagnosed me, so if you go to a cardiologist (which I think is a good idea), ask to see the EP in the group. Any cardiology group should have at least one EP in the group. Mine looked back at my holter monitor results that I had been told were "within normal limits" by my GP, and said "I think you have dysautonomia". So just because they (your neurologist??) said your holter was ok, maybe there's something the EP will pick up on. I went to 10 different doctors in a year and had lots of testing that was normal and I still feel like I'm not at the root of my problem. You just gotta hang in there. I still don't know the reason or cause of my dysautonomia and I've come to realize that I probably won't ever know, but I feel better with my treatment. I'm thinking you had a referral for Vanderbilt (???). Maybe they can figure it out. *fingers crossed*
  21. I have been totally let down by my GP. So much so, that I do not want to go back to her so I'm kind of without one right now. I wanted her to look at 'the whole picture' and tie everything together, but her response was to just give me an anti-depressant. I think she can only handle things like : diabetes, thyroid issues, high blood pressure--you know the "easy stuff" (not to offend anyone that has one of these issues, but they are mostly more straight forward) --something they can give a pill and it'll get better. For chronic unknown stuff like we have, they don't know what to do. Mine did do a pulmonary test at her office, but then she sent me to a pulmonologist. That's probably your best option right now. Best wishes!!
  22. I don't know anything about this test, but the other day I found a piece of paper that I had scribbled down some notes on and one of them was 'ganglioside antibody test'. I guess I read somewhere that it could be a useful test??? Please let us know when you find out what it means. I hope it's a useful piece of your puzzle.
  23. Yes, I had blood tests: acetylcholine receptor binding antibody, anti striated muscle antibody, and a creatine kinase. All normal/negative. Are you going to get it checked out? I was referred to a different neuro and he just did the regular neuro eval (checked reflexes, had me push/pull against his hands, checked my eyes) and said that he didn't think I had anything neuromuscular. I think he should have done more. If you go, let us know how it went and what they check you for.
  24. Was this a treadmill test? I've had a stress test and pulmonary function tests, but not at the same time. My first pulmonary test said "suggestive of neuromuscular disease" because I had some air trapping. My second pulmonary test was normal, so the pulmo said I was ok. I still have shortness of breath when I do just about anything. So, I don't feel ok My neuro ordered a test for MG, but it was negative. I think I might have something neuromuscular, but I haven't investigated it any further. The last few days, I've felt like my diaphragm is in a spasm, really tight. I don't know which doc to go to so I sit here not going to any of them. Did your doc recommend what to do??
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