comet555 Posted September 1, 2011 Report Share Posted September 1, 2011 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. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted September 1, 2011 Report Share Posted September 1, 2011 IM sorry your going through this... it can be so frustrating!That is crazy that your primary is going to take over your POTS case. Mine wont even touch mine because he admits that he does not know a lot about it and I only see him for anything that is not POTS related or to get a referal. Usually we tend to stay with cardiologists or neurologists. I have a cardiologist that has taken over my POTS case. That is weird that he diagnosed you and wont treat you. I would maybe look into finding another one beause they dont really seem like they care.Take care and I hope you get some answers soon! Quote Link to comment Share on other sites More sharing options...
comet555 Posted September 1, 2011 Author Report Share Posted September 1, 2011 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! Quote Link to comment Share on other sites More sharing options...
sylvan Posted September 1, 2011 Report Share Posted September 1, 2011 That sounds sort of like my cardiologist -- he told me it was way over his head and only kept helping me because the neurologist and endocrinologist dismissed my symptoms as not in their area and he had a friend who was some sort of specialist that he could chat with (plus, he was a nice guy and not willing to let me go on with unexplained tachycardia). I suspect if my accidental fix had not occurred I would have ended up the patient of his friend.I don't know what sort of situation you're in, but it might be worth just making an appointment with the cardiologist -- with you in front of him, you'll be a lot harder to ignore or put off. He'll have to either perscribe those drugs he talked about or refer you on to someone else. I would think that he would be more networked with the appropriate specialists than your primary, if a new doc is needed. Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 1, 2011 Report Share Posted September 1, 2011 (edited) I am sorry you are going through this with the doctors. I see a cardiologist who is the one that diagnosed me and a neurologist that is a POTS specialist. My primary and a previous neurologist both referred me to the POTS neurologist once we had the diagnosis because they felt unqualified to treat me. I remember seeing a post or some information on this site somewhere about an Autonomic Institute in Canada. Maybe you could look into going there to get treatment from doctors who specialize in this disorder. I wish you all the best and totally get your frustration! Edited September 1, 2011 by corina removed unnecessary quoting Quote Link to comment Share on other sites More sharing options...
comet555 Posted September 1, 2011 Author Report Share Posted September 1, 2011 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. Quote Link to comment Share on other sites More sharing options...
comet555 Posted September 14, 2011 Author Report Share Posted September 14, 2011 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! Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 14, 2011 Report Share Posted September 14, 2011 I can't believe they can't even decide which doc you should make an appt. with. I totally understand your frustration. Something else you said rang true with me, too. After 4 years of knowing something was wrong and not having a diagnosis, I was so excited to get a diagnosis in Feb. But, here we are in Sept. and my symptoms are worse instead of better and I am also ready to get on with it. Intellectually, I understand that it will take a while to find a good treatment plan, but, emotionally, I want them to treat me with everything they've got and quick! I, too, am frustrated. Hope you hear something soon. Quote Link to comment Share on other sites More sharing options...
comet555 Posted October 1, 2011 Author Report Share Posted October 1, 2011 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! Quote Link to comment Share on other sites More sharing options...
corina Posted October 1, 2011 Report Share Posted October 1, 2011 just don't know what to say comet, really can't understand how they can work like this. sending warm thoughts and hope you can keep up your spirits!corina Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 1, 2011 Report Share Posted October 1, 2011 I can only imagine how frustrating your situation is! When I got my diagnosis, I really didn't understand it, so the fact that they didn't "do something" beyond recommending increased salt and prescribing support hose didn't phase me until much later. I was so foggy back then it truly didn't occur to me that I might be treated for my symptoms! Getting the right "team" together for my medical care took quite a bit of time as well. I know it can be frustrating, especially since it is natural to think that once you have an answer to what is wrong surely there must be a way to fix it, so hang in there! I will be thinking healing thoughts your direction in the meantime. Sandy Quote Link to comment Share on other sites More sharing options...
comet555 Posted October 2, 2011 Author Report Share Posted October 2, 2011 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! Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted October 2, 2011 Report Share Posted October 2, 2011 He should have just faxed it or sent it with you within a day or two. Quote Link to comment Share on other sites More sharing options...
comet555 Posted October 2, 2011 Author Report Share Posted October 2, 2011 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. Quote Link to comment Share on other sites More sharing options...
comet555 Posted November 2, 2011 Author Report Share Posted November 2, 2011 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. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 2, 2011 Report Share Posted November 2, 2011 Comet,What are the chances of you being able to see a new cardiologist? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted November 2, 2011 Report Share Posted November 2, 2011 Oh Comet I feel for you! Welcome to the canadian medical system!! It is just so frustrating trying to navigate through all the red tape.....and then when you do finally get some answers good luck getting someone to take it on.....I went through the exact same thing for over 4 years it wasnt until my legs starting pooling that they couldnt deny there was an issue. All I can say is be persisitant!! You know your body better than they do.....demand for a referral.....be the squeaky wheel if needed.....if the letter is suggesting you need a beta blocker than obviously there is an issue. Another thing that helped me was I started taking pictures of my legs, arms, etc when they started pooling and would show them to every specialist I saw....its true a picture is worth a thousand words Hang in there and keep fighting! Quote Link to comment Share on other sites More sharing options...
comet555 Posted November 3, 2011 Author Report Share Posted November 3, 2011 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. Quote Link to comment Share on other sites More sharing options...
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