wareagle Posted June 7, 2010 Report Share Posted June 7, 2010 I found out today that the autonomic specialist I see is on medical leave and no longer seeing patients. I feel so lost and terrified right now. I've been so fortunate to have a doctor that knows all about dysautonomia since I was dx 6 yrs ago...and now I have no one. This summer I was going to try new treatments...and adjust my current meds...now I'm just trying to find a doctor that feels comfortable enough to continue me on my current meds.I have an appointment with an Internal Med doc for next week. I had to call more than 5 doctors just to find someone that was still taking new patients. I'm pretty sure I'll get referred out to someone else...I just don't know who...a neuro or cardio? I just don't have the strength to break in a new doc...and don't know how I'm going to deal with this.To top it off...I finally made an appointment to get my Chicken Pox vaccine and now I'm wondering if I should go through with it? Quote Link to comment Share on other sites More sharing options...
lieze Posted June 7, 2010 Report Share Posted June 7, 2010 I'm sorry you lost your doctor.I wonder if they will look for a replacement in your area?As far as the vaccine I know what you mean about getting scared you will have a reaction.Chicken pox is the reason I am here today. Quote Link to comment Share on other sites More sharing options...
Guest humanb4monitor Posted June 8, 2010 Report Share Posted June 8, 2010 I am sorry as well. I lost mine a few yars ago and found him as a weird fluke. And he turned out to be on of the few on the POTS list and never knew he was here.I thought I was HYPER thyroid when I saw him and had been in that dept so many times. He told me that day I had POTS.He was a data guy and that was often a bother BUT he still KNEW. He wanted me to see other docs for all the stuff that goes with POTS. He was the "numbers guy."I miss him.I am going to try the Cleveland Cclinic for the connection between so so many things. Of everything now--it is my sleep disorders that'll get me.Try try not to let it get you down and IF you do not like who you try, try again.But I always say that it is UP TO US to teach each oter management. That is how it is done eut no one ever wants to stick with it and that is why we break. We can't stick with stuff! And make a thread an dcheck i almost every day.Have had POTS all my life. Send a message anytime you wish. Anytime.I am sicker than ever and can say all of this is really making me mad now. The pacifist in me is gone these last months.LOVE is being sent to you! Quote Link to comment Share on other sites More sharing options...
Tommyhoney Posted June 8, 2010 Report Share Posted June 8, 2010 Hi Wareagle,I'm right here with you....I lost him too. Traveled there last week to see him, he missed appt, and then I was notified about his medical leave. I too, am terrified....going through TWO disability appeals at same time, he's the only doc that has confidence to deal with them. And I don't have the strength to go through the whole circus of testing again, at Mayo, or Vanderbilt.....I feel so lost, and worried...And that just makes us feel physically wonderful now doesn't it.Please feel free to PM me if you need to vent, or if you get any positive feedback.Hang in there,Tommy Quote Link to comment Share on other sites More sharing options...
wareagle Posted June 8, 2010 Author Report Share Posted June 8, 2010 Thanks for the support guys!Tommy,I'm actually going through a disability reveiw and I have no idea how this is going to effect their decision. I don't know what the process is and just hope they don't require the doctor to fill out anything! Quote Link to comment Share on other sites More sharing options...
Crow Posted June 8, 2010 Report Share Posted June 8, 2010 I found out today that the autonomic specialist I see is on medical leave and no longer seeing patients. I feel so lost and terrified right now. I've been so fortunate to have a doctor that knows all about dysautonomia since I was dx 6 yrs ago...and now I have no one. This summer I was going to try new treatments...and adjust my current meds...now I'm just trying to find a doctor that feels comfortable enough to continue me on my current meds.I have an appointment with an Internal Med doc for next week. I had to call more than 5 doctors just to find someone that was still taking new patients. I'm pretty sure I'll get referred out to someone else...I just don't know who...a neuro or cardio? I just don't have the strength to break in a new doc...and don't know how I'm going to deal with this.To top it off...I finally made an appointment to get my Chicken Pox vaccine and now I'm wondering if I should go through with it?Since some folks with Ehlers Danlos syndrome, a connective tissue disorder, get dysautonomia, maybe someone at the new clinic in Birmingham can help point you to someone? http://www.genetics.uab.edu/bonedysplasiaClinic.html Quote Link to comment Share on other sites More sharing options...
Tommyhoney Posted June 8, 2010 Report Share Posted June 8, 2010 Wareagle-I have ssdi hearing tomorrow, and am in the middle of appeal with my LTD. I know exactly how you feel. I can't get my blood pressure up today- too much going on all at once, I suppose. I called Vandy today- first available appt 2 December. Quote Link to comment Share on other sites More sharing options...
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