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MTRJ75

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  1. Thank you Scout. I've had plenty of MRIs. It's not the procedure that concerns me, it's the potential results or why it was even ordered in the first place. I'm having great difficulty scheduling it anyway. The only place my insurance will cover is quite a ride, wants me there at 9am and doesn't have an opening until March. Needless to say, none of these conditions work.
  2. Melatonin is a God send in helping me sleep. I'm only taking 5 mg per night (and have been on and off for a few years), but trying not to take it every night because I'm not sure of the science behind long term use. I'm not sure if it would help with any of this. Besides, ideally there would be a non-drowsy solution. I already have enough trouble getting up and around.
  3. Do people end up extra fidgety with this as well. As this particular set of symptoms have been really difficult this weekend, I'm realizing that I'm constantly doing something with my arms or hands with all this subtle rocking/bobbing back and forth. Wonder if this is more an adrenaline issue than what some people are talking about here.
  4. The strange thing, which adds to this and that I mentioned in another thread, is that I recently had an echo that the doctor couldn't even read. And it's not even the first time something like that has happened to me. So there must be something going on with blood flow. I just don't know how to tell if these particular issues are connected and I'm not optimisticl the doctors would be able to put it together either.
  5. Thanks Kim. This is what I meant. Perhaps with our circulation issues, lack of blood flow doesn't allow for proper healing in a timely manner and if this might be the case, I might want to avoid either of the options the doctor, who seems outmatched, has given to me as neither seems to be without harm.
  6. I'd like to find more of these supportive people. I seem to have a group that's more tolerative than supportive. When I ask for help, they'll give it. I do feel guilty about the burden I place on people sometimes and sometimes they seem frustrated that I am unable to do help them in return. I get a lot of "all you have to do" because it's a simple thing or something I used to be able to do easily. I've also found myself calling friends less frequently because I want to do something other than complain to them. Lately I'm noticing a lot of friends and family rarely ask how I'm doing anymore or if they do, they'll listen without responding or quickly change the subject. If I try to put myself in a positive mind space and "act" less sick, I'm met with higher expectations. "You're in a better mood so you must feel better" or "you're don't look or sound as bad so you must be able to do (whatever they want done) now". It's incredibly frustrating not only to not be able to do what should be simple tasks, but also to keep having to tell people you can't do them even if you look fine and just did something else and also keep having to explain the same things to them. And I don't blame them either. I never would have been able to understand any of this until it actually happened to me.
  7. For me it's more of a bobbing sensation back and forth, mostly felt whenever I am reclined or lying down with my back pressing against something. It's almost like a beat my body is moving to. Perhaps worse right after sitting down after small exertions. But I always feel like I'm moving subtly, never still. Often feels in tune with the heartbeat, but sometimes more erratic or much faster. The boat analogy is interesting, but I wouldn't describe it as floating, more rocking. I've also gotten the twitches for years. One of my first symptoms. Comes and goes as do the involuntary muscle jerks when lying down. These seem to come in waves and then disappear for long periods of time. Probably worse when stress is worse. I could be wrong, but I believe Parkinsons starts as a tremor or unsteadiness in the extremities?
  8. Two weeks ago, the podiatrist placed me on a course of antibiotics for what very clearly was some kind of infection around the toenail. The drainage cleared up around the third day of the antibiotic. However, there still remains some inflamed redness around the area below and to the right of the nail. It's not incredibly painful, but irritating and does not seem to be healing. Went back to the podiatrist yesterday and like most things I present with to most doctors, he's not sure what's going on. Suggestions were another round of antibiotics or nail removal, neither of which he was confident would actually do anything because the nail itself is fine now and I'd really rather not start building up an antibiotic resistance, not to mention that I often don't handle them well. There's no actual wound. It's just inflamed and red and has been that way for over two weeks now. I'm now wondering if it's a blood flow issue preventing the healing. I know in some sense this sounds strange because when we stand up, our blood generally stays in the lower portion of our bodies. That's part of the problem, but perhaps low blood volume overall is causing the lack of healing here as I'm often reclined on the couch more often than moving around these days. I am not diabetic, but often run into many of the same issues diabetics do. Peripheral Artery Disease frequently comes up on Dr Google (and I'll probably call the cardiologist again to bother her with something completely new), but a lot of it reads as stuff that can seem similar to low blood volume, poor blood flow from dysautonomia/POTs. Anyone? As I told the podiatrist, the main concern is that I'm not sitting here to wait for something to heal for weeks while it's actually a spreading infection, but he said there's nothing to even culture for bacteria anymore, so he doesn't believe that's likely to be the case.
  9. As I had previously mentioned, I didn't even want to know anything about this until my cardiologist had all the results, but I received something in the mail from my the office today and opened it thinking it was some kind of billing, but it was actually the MRI script with a diagnoses of Cardiomyopathy. So, instead of consulting Dr Google, I'll ask for those who might have more experience with these type things here... I guess I have a more specific question now: Can POTS (or any type of autonomic dysfunction) be frequently misdiagnosed or show up as a potential cardiomyopathy on testing, especially if the doctors don't have a lot of experience dealing with these types of things?
  10. No, that is one issue I certainly don't have @KiminOrlando Thanks for the responses. I was hoping that there might be some blood flow issues due to the POTS that might have led to some difficulty. This isn't the first time something like this has happened to me. I had an issue with an ultrasound of my neck once that said I had a 70% blockage, but then the MRA said it was fine. Also remember having an issue with an unclear echo in the past, but I think she just ordered another echo. My cardiologist has changed groups since my last one, so I think every echo I've ever had (three or four of them now) have done in a different place by a different person.
  11. Had an echo a week ago. Expected it to come back with no issues so I can concentrate on all of my issues stemming from autonomic dysfunction. Today, the doctor's assistant calls and says she wants me to get a cardiac MRI. The reason given was that the echo was of poor quality. I did have a scare a few years ago (2015) where an echo showed potential pulmonary hypertension, but that was ruled out with an exceptionally painful catherization. I told my cardiologist I never wanted to hear the PH words again. Part of me doesn't even want to know the reason for this because it'll just increase my anxiety when I was getting it under control this week. I guess my questions are 1) Is echo quality commonly problematic among us? 2) Has anyone else had to do this and there's a chance I'm going to stress the next few weeks over nothing?
  12. The way it's been explained to me is if we can take the emotional charge out of it, refocus thoughts on anticipation and attention, we might be able to "rewire" our system. Not so we're ignoring these symptoms, but so that it somewhat normalizes in this respect. It sounds very difficult to do and I've been unsuccessful so far, but you would still likely notice something that was different than the palpitations you usually feel. But if we're sure that whatever we're dealing isn't cause for concern (AND ONLY IF), then I would view it as a positive if we were somehow able to disregard it when the alternative is the constant mental suffering we endure.
  13. I know he was looking up the medications while I was talking to him, so maybe there's some interaction between the Lexapro and some antibiotics that wouldn't allow for the full effect. Maybe he wouldn't have changed anything if I had been on it for a month or more and it was more ingrained into my system. Gotta say though, not feeling any different four days off it than I was for the 3+ weeks I was on it. For the last few years I've been following a mostly Autoimmune Paleo diet with an occasional dip into non-AIP paleo foods and occasional bouts of weakness beyond that when I'm really hungry and don't have better alternatives. But like I said, I've always had a pretty active bladder and the movie experience isn't the norm, but the most extreme, which I feel had more to do with those new reclining movie seats.
  14. Thanks for the resource. I've only briefly skimmed so far, but if this is for the general population instead of dysautonomia patients, I wonder if the mechanisms are going to be different. Maybe the answer is further down in the study. If the heart is normal and nothing is wrong though, why would it be a bad idea if we were somehow able to retrain ourselves to not feel them so badly anymore?
  15. Do you remember anything that might have led to your remission? Was there a particular mindset? I've read things about people more at ease with their symptoms potentially being more likely to recover. What we resist persists maybe. Much either said than done of course. Edit: Also, thank you for coming back and posting even when you're well to give the rest of us some hope.
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