DizzyPopcorn Posted September 28, 2019 Report Share Posted September 28, 2019 Title says it all... So tired of having symptoms and waiting for a specialist. Im still not sure if i have pots or something else and im feeling like crap. Waiting feels like an eternity. How long did you guys have to wait for a specialist? Quote Link to comment Share on other sites More sharing options...
Random-Symptom Man Posted September 28, 2019 Report Share Posted September 28, 2019 I’m sorry your having to wait. I feel the same way. I even have doctor friends who pulled strings, and it felt/feels like ages. Every month is an eternity. Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 28, 2019 Report Share Posted September 28, 2019 As soon as I expected Dysautonomia I asked to be referred to a specialist. It took a year but I got my diagnosis. I think it is essential that we do not expect regular cardiologists or neurologists to know about our condition - unfortunately so. We have to consider traveling, out-of-pocket expenses and waiting lists or we will just find ourselves frustrated. If we sit around waiting for the closest doc to come up with a solution we are waiting valuable time. There are several renowned autonomic clinics in the US - go there !,,,,, Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 28, 2019 Author Report Share Posted September 28, 2019 Unfortunately im not from the us, so thats not an option for me. Im not rich enough to see anything on the us side. Im supposed to have a specialist see me in Montreal that knows about pots within the next tree months. Ive been waiting 2 already. It should be free as well. If this doesnt work or the doctor decide he doesnt like my face im pretty much dead. There will be no one else on my side to check my symptoms out. We dont have many autonomic specialists here. Ive already been to 3 different ER for my problems that got worse and all i got from them was : Its anxiety, it will pass with x pills Its viral, it will pass soon Go back to your primary care giver I even had one guy straight tell me "stop wasting my time and come back only if you feel you are anout to die. Before then, stop wasting our ressources" Wow thanks a lot doc. **** them all. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted September 28, 2019 Report Share Posted September 28, 2019 I have been complaining about symptoms for years but after fainting numerous times my own GP suspects POTS. I waited almost two years before I was seen at a syncope clinic . I’m in UK . I couldn’t afford to go privately because here if you do you have to pay for all the tests and any medication prescribed., l also wasn’t working . I know it seems like every day is an eternity . Quote Link to comment Share on other sites More sharing options...
yogini Posted September 28, 2019 Report Share Posted September 28, 2019 get on the cancellation list if there is one or call once a week to see if they have cancellations. You can do a poor man's tilt at home, and start measuring your heart rate and BP and you will get a sense if you have dysautonomia. Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 28, 2019 Author Report Share Posted September 28, 2019 Unfortunately, ive been doing this for the past 2 years. I had to convince my doctors that something was wrong with me. But at least before it was manageable. Right now im not feeling too well. My poor mans tilts are close to those of pots. It depends on the day. Sometimes its 20, sometimes its 40. 1 hour ago, yogini said: get on the cancellation list if there is one or call once a week to see if they have cancellations. You can do a poor man's tilt at home, and start measuring your heart rate and BP and you will get a sense if you have dysautonomia. Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 30, 2019 Report Share Posted September 30, 2019 I waited seven months to see my dysautonomia doc. Thanks to insurance changes I can no longer see her so I got a referral to neurology a month ago and they are still triaging so I don't even have an appointment yet. They don't have any doctors that treat POTS so I'm afraid they won't make an appointment for me at all, even though I am having new symptoms that could be anything from neuropathy to a brain tumor, not necessarily POTS. I am about to schedule with a therapist to talk about how I have these unbearable symptoms and nobody will help me. At least I know I will be able to get an appointment with psychiatry. Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 30, 2019 Author Report Share Posted September 30, 2019 7 minutes ago, KaciCrochets said: I waited seven months to see my dysautonomia doc. Thanks to insurance changes I can no longer see her so I got a referral to neurology a month ago and they are still triaging so I don't even have an appointment yet. They don't have any doctors that treat POTS so I'm afraid they won't make an appointment for me at all, even though I am having new symptoms that could be anything from neuropathy to a brain tumor, not necessarily POTS. I am about to schedule with a therapist to talk about how I have these unbearable symptoms and nobody will help me. At least I know I will be able to get an appointment with psychiatry. Seriously, what the h*** is wrong with life on earth. It shouldn't be so fricking hard being alive. Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 30, 2019 Report Share Posted September 30, 2019 9 minutes ago, DizzyPopcorn said: Seriously, what the h*** is wrong with life on earth. It shouldn't be so fricking hard being alive. Truer words were never spoken, my friend. Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 30, 2019 Author Report Share Posted September 30, 2019 5 hours ago, KaciCrochets said: Truer words were never spoken, my friend. Wish i was wrong Quote Link to comment Share on other sites More sharing options...
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