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Everything posted by comet555

  1. For the last 5-10 years I had thought there was something wrong with my thyroid as the symptoms fit. But the tests were always within the normal range. So I'm curious if my symptoms are just the dysautonomia or if there could be an underlying thyroid issue that hasn't shown up on tests. So my questions is, how many of you have a thyroid problem and how long did it take to get a diagnosis? Did you have normal test results even while you were symptomatic, or did your results reflect how you felt? I'm curious because many of the symptoms for a hypothyroid are the same as dysautonomia. I 'm not really looking for anything else to be wrong with me, would love it if there wasn't, but it seems like a fair number of people have thyroid issues and that it sometimes goes undetected for a while.
  2. I might be able to see another cardiologist, but I'd much rather try and get into the only dysautonomia specialist in the province. I'd rather go directly to someone who knows something about the condition and who is willing to treat it rather than trying other specialists at random. I'm hoping to avoid getting negative comments in my record like "it's all in her head" or "there's nothing wrong with her." Might seem silly but after seeing family doctors for a decade and getting nowhere I've learned to be cautious for fear of seeming crazy. However, I think I've finally learned that I need to push the issue or nothing will happen. It took me long enough but I'm finally there! So I'm going to try my best to see the dysautonomia specialist, and perhaps try the beta blockers in the mean time.
  3. Quick update.... My long awaited appointment with my family doctor is coming up in two weeks. I stopped by the cardiologists office to get a copy of the letter to make absolutely sure that I had it in hand for my appointment with the family doctor. I'm glad I did because the cardiologist made no mention whatsoever of dysautonomia, which is what he told me I had. He also made no mention of the fact that my blood pressure dropped 20 points upon standing up and that was what was causing the dizziness when changing positions. There is basically no mention at all of dysautonomia or pots, which is basically what we talked about in his office! I'm so ticked off right now. No idea how I'm supposed to talk to my doctor now with nothing to back it up. The only thing he did say was that he couldn't find any reason for my sinus tachycardia or palpitations and that low dose beta blockers would be the next step if things didn't improve. Another puzzling thing (and somewhat disturbing) is that he mentioned that my abdominal examination was normal.... I have no recollection whatsoever of him examining my abdomen! So he's either forgotten what he did when he was in the room or just made it up. Either that or I've completely forgotten. So, now I'm worried that when I go to my family doctor he won't believe me about the dysautonomia because it wasn't in the letter. At this point I'm thinking that I'm going to have to request to see the dysautonmia specialist about 5 hours away, hopefully he'll go for it.
  4. I didn't see any clinics posting prices for the tilt table but I did find some people who were asking around about how much they were. The answers that I saw were around $2000-3000, although it was just a quick search. I was surprised too but then it sort of makes sense as you need a quiet space for up to an hour and I imagine there's a nurse and doctor present as well (never had one so can't comment too much). But it does seem time intensive when you read people's experiences of it. I have no idea how much the labs would cost but if factor in hotels at about $100 a night (plus tax) you're adding close to $1000, although there may be cheaper places to stay, but if you're limited to staying near the hospital you may not have many choices. I've travelled a lot so I know how expensive it is to travel but the medical costs I'm not sure of. The US medical system is expensive though without any insurance. It won't be like in Australia where a lot is free and you only pay for certain things, or gap fees through the private system. Here's an online site that may give you an idea of the cost of bloodwork: https://www.directlabs.com/OrderTests/tabid/55/language/en-US/Default.aspx I'd also have a read of this thread: http://forums.dinet.org/index.php?/topic/16661-trip-to-mayo/ I'm not trying to scare you away from going there but I think it's probably a good idea to contact a few clinics and have them outlaw the major tests and the associated costs for someone who has no coverage or insurance and is from out of the country. Hopefully you can find what you need in Australia and can save a lot of money, if not then the US may be what you have to do. Have you looked into New Zealand at all? At least the airfare would be a lot cheaper there and the flights is way shorter. Something to think about.
  5. According to the DINET website there are 3 physicians in Australia that deal with dysautonoia. http://thedysautonomiaconnection.org/physician-list/ You could also try contacting this lady to see if she knows of any good physicians, she's also in Australia and has a blog. http://bobisdysautonomia.blogspot.com/p/contact-me.html http://www.facebook.com/pages/Living-With-Bob-Dysautonomia/137659809587078?sk=wall I would leave travelling to the US as a last resort, unless you've got piles of money. A first class ticket could very well cost $10,000 by itself. The cost of tests in the US could be huge, a quick google search showed the tilt table test alone could cost several thousand dollars. Hopefully you can find what you need in Australia, if not then I guess you'll do whatever you need to do.
  6. Would it be possible to get a placard for inside your vehicle? I know it's not necessary but that's what most people look for when checking to make sure drivers are supposed to park there. Even though a placard isn't needed because of your plates just the fact that it's there may stop people from hassling you about it. On the plus side at least the lady was trying to stand up for the disabled having access to the space, although she totally blew it by bullying someone who actually deserved to be there! You could either say nothing other than the fact that you are disabled and are entitled to park there, or you could just tell her that being on your feet too long causes you to faint and have seizures so unless she feels like witnessing an episode it's best to leave you alone! A little lie about the seizures but that's something scary that people recognize. Anyway, it's all pretty stupid really as you're entitled to be there and you shouldn't have to defend yourself to anyone.
  7. Lol, that would have been too simple... and I agree it should be that quick to do the letter. The problem wasn't with the doctor though, it was the secretary/assistant that had a pile of stuff to type up. I went in there several times and spoke to her trying to get a copy in person. The first time she said she was really behind as she'd been away on holidays and then was off sick, etc, etc.... so she had a pile of stuff to type up for the doctor (assuming from audio notes or something). I would imagine the more serious cardio emergencies would have been done quickly, or at least I'd hope so! But in my case I was probably at the bottom of the pile... or at least it feels that way to me after having waited for 3 months. I did try to stress to the secretary that I was frustrated because I was literally waiting for treatment while the letter waited to be typed as my doctor wouldn't see me without it. The second time I went to the office to get a copy she still hadn't done it and I stressed that I didn't even know if I was supposed to be following up with the cardiologist or with my doctor. So if the cardiologist wanted to see me I didn't even need the stupid letter, I could just make an appointment. She said she'd check and call me back and let me know. A few days later she called and told me the letter had been sent to my doctor, so from that I am guessing that the cardiologist didn't want to see me. Would be nice if they would just say which doctor will be looking after me rather than leaving it to interpretation. Anyway, I'm going to have to see the secretary yet again because it seems as though the filing is months behind at my family doctors so it might be the only way I'll have a copy in hand by the time I actually have my appointment 6 weeks from now.
  8. Thanks everyone. It's just the waiting and speculation is killing me. I have no idea whether my doctor will even talk to me about it or just refer me onwards. Also, I worry that the doctor might pass off my symptoms as minor and refuse to do much. Wait and see I guess!
  9. Time for an update.... So the letter from the cardiologist to my doctor was finally sent about a week or two ago, only 3 full months after I visited the cardiologist in the first place. Good thing it wasn't an emergency! Although I suppose if it was urgent it would have been there much faster. So I called my doctor last week to see about getting an appointment and of course he's on vacation for the week. So I check again this week and have them double check to see if the letter has made it's way into my file. Turns out my doctors office is 3 months behind scanning test results and putting them into the electronic patient files. They're still working on stuff from July! I can't believe how long everything is taking!!!! The nurse also had a look through the rather large stack of documents that had yet to be filed and couldn't see it either, so who knows how long it'll take to get into my file. I did try to make an appointment and found out his soonest booking were the end of December. So wasn't pleased about this as I've been trying to see him since the first week of August (which would make it 5 months later!). Thankfully the nurse sympathized with how long this has all taken and said the doctor would fit in a chat about during my weekly physical schedule for mid November. So now only have to wait 6 weeks. Not sure whether to be happy or to cry about this! I'm also not sure how much time he'll be able to squeeze in to chat about it either. I think if things were happening I'd be less impatient but I'm just ready for the next step whether it's more testing or drugs, or whatever. The last 3 months just waiting to be seen has been driving me crazy! I also suspect that when I do see my family doctor there's a decent chance he'll send me to the specialist (which is great) but would mean an even longer wait to get in again. So, in short.... I'm still very frustrated and waiting to be seen. Thankfully my symptoms are mild compared to many on here so I recognize there's no urgency. I'm just soooo ready to see if there's a chance for me to actually have some energy again after a decade of fatigue. Crossing fingers I can get in a bit sooner!
  10. Every forum I've ever posted on has been public (ie. will show up on google). Think about it this way, before you signed up you were able to read through the topics and replies. So once you sign up and start posting all of your posts are visible to anyone that is a member or not. Google just crawls around the internet and kind of takes snapshots of everything. So anything on the web (blogs, discussion forum, facebook, etc) can be found by googling it. If you have a more unique username (like mine, comet555) then you can even do a google search on the username and you can see all of my posts on various forums since I've always used the same username. Didn't really think that through! This is why it's important to choose a username that doesn't identify you (like your first and last name). Just the first name isn't too bad but I've seen people username contain both first and last which isn't the smartest thing to do.
  11. Has your doctor checked your heart rate and bp laying, sitting and then standing? My doctor ordered the holter monitor after he discovered that my heart rate jumped up as soon as I stood. He thought that was odd & interesting and worth a further look with the holter monitor. So if he/she hasn't tried that already it's worth a shot.
  12. It's funny.. I don't really feel the need to apologize because I've always tried to do as much as I can. My problem is though that the cardiologist felt my symptoms were mild, which I agree they probably are, so I worry that he won't take me seriously when he sees what I can do. My thing is though that I still feel tired all the time and pretty crappy. So I do all those things despite how I feel because I'd like to carry on living life as normal as possible. I'm out of breath walking up the stairs so I might as well be out of breathe playing sports I love! I start playing hockey again this Sunday after about a year and a half break. I honestly have no idea how I'm going to do it at the moment. I haven't felt this tired and crappy in years and don't recall playing when I felt this bad. I'm starting to think that playing sports for so long has helped keep me from getting to this point and my year off has made me back slide quite a bit. Either way, I have to play again and am just hoping I can do it. I took my son public skating and did two laps at medium speed and was so tired that I was out of breath and my legs were exhausted. So playing an hour game should be fun! Oddly enough I've always found the inhalers I was given did absolutely nothing. The only thing that I felt did do something was Singulair. When I took that and played hockey I couldn't feel the blood rushing through my legs so badly and it seemed like I could manage most of the game with a decent amount of energy and only having bigger breathing difficulties at the very end rather than part way through. So having read some of the other diagnosis on here (mast cell, mito, etc) with Singular as a treatment I wonder if there might be something to it for me. At the time the doctors couldn't explain my positive reaction to Singulair.
  13. Erin Brockovich. I can't remember a lot of things, but movies I get!
  14. Well, it's been two weeks so I stopped into the cardiologists office yesterday and the secretary still hasn't done the letter! So I told her that I don't even know if I need the letter because I'm not sure which doctor is doing the follow up. She said she already had it on the doctors clip board on the weekend to ask him what to do with me, apparently he never came in though. So.... still waiting to find out who wants me and if it's my family doctor then I'm waiting for the letter too. I also asked about how long the wait is to get into the cardiologist as I was getting concerned that it would take months to get in. The secretary said not to worry she'd get me in quickly, she probably feels bad that this whole process has taken so long (12 weeks so far!). Anyway, still very frustrated and hoping that something will happen soon. After feeling this way for over a decade I'm so ready to try something, anything that might help me feel better... and this waiting is driving me crazy!
  15. For those of you going to Hamilton for treatment did you need to get a referral from your doctor, or can you just call and appointment yourself? Also, how long did you have to wait for an appointment? I only ask because I'm in limbo at the moment waiting for the cardiologist to send the letter he promised to my family doctor. Until then I have no idea what they are going to do with me. So while I'm waiting is still waiting to be typed up by the doctors secretary (after two months!). I went in to collect it myself and she said she was away lots this summer and had lots of catching up to do. So I'm am pretty ticked off that I have to wait for treatment because of this letter. If I was able to book my own appointment I could speed things up a bit. Would just really like to get onto the next phase!
  16. Lol, yes... I noticed Mexico too. We'll just blame it on the dysautonomia!
  17. Lol, I can't believe Canada didn't make the list in any category! So by default I voted "other".
  18. I've always alternated back and forth as well. I've never found any rhyme or reason to it either, so it was never really something I brought up with doctors. I just got my diagnosis, although have had this for many years, so I can't really comment on what the doctors make of it yet. I have read that these symptoms can be part of dysautonomia though.
  19. I would definitely pick fatigue. That is the one constant although the degree does vary. Light-headedness would come second to the fatigue only because it's not there all of the time.
  20. Thank you so much!!! Seriously, that was so helpful. I don't care which doctor I see as long is they understand what it's like to life with and how to treat it. It's taken me over 10 years to get to this point as for so long I honestly thought it was all in my head. The doctors kept telling me I was fine and giving me inhalers to deal with the exercise intolerance, even though I told them that didn't work! I was actually excited about the diagnosis because it meant that it was something "real" and at least gave me hope that I might feel differently. So I'm totally relieved that they seem so understanding. I'm definitely going to push to go there now. I'm between Ottawa and Kingston so Hamilton is about 4-5 hours away. So it would be nice if they could do as much possible over a day or two while I'm there. Are you close to Hamilton?
  21. Good luck with the new meds! Sorry no experience with them, but just had to ask about your experience there I assume you saw Dr. Morillo. I'm hoping my doctor will send me down to Hamilton as I'm new to this although have likely had it for about 10-15 years. Does it take long to get an appointment there and do they do lots of testing. Sorry for hijacking your thread but I haven't really found anyone who's been there yet.
  22. I'm assuming the cardiologist has some experience with it as he diagnosed me in our first visit based on the holter monitor, echo & ecg (echo & ecg were normal). The big tell for him was the elevated BP and drop in blood pressure upon standing. So he knows enough to diagnose it but I'm not sure if he treats it afterwards. He also mentioned my symptoms were mild, which admittedly they are compared to many I've seen on here. So I'm not sure how helpful he's going to want to be if he feels I have a mild case. The thing is that even though I agree that my symptoms are mild I still see the impact in everyday life. I'm always tired and get light headed often although don't pass out (although have years and years ago). So I want to push for some sort of treatment just to see if there's an improvement. I'm hoping to see the autonomic disorders clinic in Hamilton which is about a 4-5 hour drive away. Unfortunately it's not somewhere I'd go for regular treatment but it would be a good starting point and maybe they could be in contact with a doctor close to me. There is another one in Montreal, about 2 hours away, but it's in another province and I'm not sure if that would be covered by our provincial health care or not. If it was then I could do it in a day trip and could see them semi-regularly a least. I just wish the secretary would type up the stupid letter already, I mean how long can it be! I think two months is a long time to wait for something like that. My family doctor usually books about 2-3 months ahead, although they do save space everyday for emergency visits so I could always try to get in that way I guess.
  23. I actually have no idea if I'm supposed to stay with the cardiologist or go back to my family doctor. When the cardiologist gave me the diagnosis he sort of stressed that there was nothing physically wrong with my heart. So I asked him if I needed to see him for this and he said no. We didn't chat much and I just got the impression that he didn't need to see me again. He did say that if increasing my salt intake didn't work then there were drugs we could try, but he didn't really specify who I was supposed to see. I know I should have asked but at the time I was just so relieved to have a diagnosis that explained everything after all this time I just couldn't really focus on the details! I may try calling the cardiologist office directly and asking if I'm supposed to go back to him or to my family doctor. It would help to know because if it is he cardiologist then there will likely be a longer wait time so I'd rather book now as there's no telling how long it'll take them to type up the letter!
  24. Just had to vent a bit. I saw my cardiologist at the end of June which is when I finally got the diagnosis. He said to try getting as much salt as possible into my diet and see if that helps. Well, it hasn't so I tried to go see my family doctor as I'm not really sure who's going to be treating me just yet. Anyway, the cardiologist said they would send a letter over to my doctor with all the info he'd need and after two months it's still not there yet! I had actually booked an appointment with my doctor but he wants to wait until he sees the letter and didn't really even want to discuss anything, this is a new diagnosis so I'm sure he just wants to know what the story is. I even went to the cardiologists office to get a copy of the letter and the receptionist said that she's really behind as she's been sick and away on vacation. She's was really nice but I was pretty ticked off that after two months she still hasn't typed up the letter and that I'm having to wait for treatment because of it. She did say she's have a look into it and see if she could get to it sooner. I'm just so frustrated because after I got the diagnosis (after 15 long years!) I was finally hoping I might start to feel better. Now I'm stuck waiting for a stupid letter! Not a big deal in the grand scheme of things, I've already waited this long what's a little longer I guess.
  25. I have similar exercise symptoms to you and was always handed an inhaler when growing up as though that would be the solution to all my problems! I kept telling the doctors that the inhaler does nothing but they never really believed me (or had no clue). I did have to laugh about your comment about going through door ways. I quite often bump a bit of my arms or catch part of my pants on doorways as I somehow misjudge it a little bit when going through. Not all the time mind you but enough to make my husband think I'm clumsy sometimes. I've always thought this was odd as I'm actually really coordinated and good and pretty much most sports I try. So I always felt silly bumping into things. Unfortunately I never really saw my occasional clumsiness as a symptom of anything. I have plenty of symptoms that on their own seem just sort of laughable like telling the doctor you sometimes bump into the door frame, but not always!
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