MarieR Posted November 29, 2016 Report Share Posted November 29, 2016 Hi all, I am new to the forums here. I was diagnosed earlier this year with POTS, but like so many of you my journey started many years before. Based on my dr, he believes I have had to 10-15 years, with the past 4yrs or so having every test under the sun done. It's nice to know what is going. For me, medications haven't helped much and just seem to aggravate my symptoms. But we are just plugging away at life anyway! I just thought I would introduce myself and say hello! Quote Link to comment Share on other sites More sharing options...
angelloz Posted November 29, 2016 Report Share Posted November 29, 2016 Hello, Glad you have at least gotten a diagnosis. I haven't had much luck with medications as well. More later but wanted to welcome you! Quote Link to comment Share on other sites More sharing options...
statesof Posted November 29, 2016 Report Share Posted November 29, 2016 Hi MarieR, glad to have you here. Feel free to ask any questions you may have about your POTS diagnosis as there are many people here on the board with a wide range of symptom experiences. Quote Link to comment Share on other sites More sharing options...
MarieR Posted November 30, 2016 Author Report Share Posted November 30, 2016 Thank you both!!! So glad I found this community! Quote Link to comment Share on other sites More sharing options...
BillC Posted November 30, 2016 Report Share Posted November 30, 2016 New here I have been diagnosed with degenerative autonomic nervous system disease. It started with a major spinal injury I had open thorasic surgery for the t7and t8 disk. I have also been diagnosed with degenerative disk disease, and require anouther surgery for a c4 disk. I was scheduled for surgery but it was cancelled because they do not believe that I could survive it with the dysautonomia I have been told by my Gp doctor that I could die any day or could live 6 months is there any one with some knolage that I could cat with any time tomorrow by chat cell land line email or by iChat I would pay to find a person to please catch me up on everything I feel so lost and I can't find a doctor in Indiana I have Seen 11 doctors in the last few years I live in the Midwest Indiana so heat is not to bad please contact me or email me thanks bill Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted November 30, 2016 Report Share Posted November 30, 2016 Hi, Marie, Happy you've found us! Suffering undiagnosed for 10-15 years with POTS symptoms sounds so difficult and challenging. You'll find many people here on the forums that are able to relate to that. The good news is that many improve to some degree after a diagnosis. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted November 30, 2016 Report Share Posted November 30, 2016 10 hours ago, BillC said: New here I have been diagnosed with degenerative autonomic nervous system disease. It started with a major spinal injury I had open thorasic surgery for the t7and t8 disk. I have also been diagnosed with degenerative disk disease, and require anouther surgery for a c4 disk. I was scheduled for surgery but it was cancelled because they do not believe that I could survive it with the dysautonomia I have been told by my Gp doctor that I could die any day or could live 6 months is there any one with some knolage that I could cat with any time tomorrow by chat cell land line email or by iChat I would pay to find a person to please catch me up on everything I feel so lost and I can't find a doctor in Indiana I have Seen 11 doctors in the last few years I live in the Midwest Indiana so heat is not to bad please contact me or email me thanks bill Hi, Bill. Welcome to DINET. Has your doctor considered sending you to the Mayo Clinic? I'm not sure if you can travel, however, if you are able to I would seriously consider seeing their autonomic specialists there. They are 1 out of 3 centers in the US that see the most challenging and complex cases. I'm not sure how far away Columbus, OH is from you, but there is also a fantastic specialist there, Dr. Grubb. I'm truly sorry that you are struggling with all this. Quote Link to comment Share on other sites More sharing options...
BillC Posted November 30, 2016 Report Share Posted November 30, 2016 Yes we are working with a team there as well they are the team that finally came up with the final diagnoses but the drugs they have prescribed a wide array of drugs most have not worked at one time I was on 17 different prescriptions some taken only to relive a symptom I have now on my own reduced that to 8 and feel better than when on all of the others. I have already felt more hope Due to the fact that so many on here have been able to live so much longer with this condition. Quote Link to comment Share on other sites More sharing options...
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