Newoldpotsie Posted July 29, 2014 Report Share Posted July 29, 2014 Hi everyone-I'm new to this site and prepared a long, detailed introduction over the weekend but somehow lost it in cyberspace - it's always difficult on this iPhone-that's what happens with us old folk and technology!! So briefly, 55 year old female diagnosed with POTS/dysautonomia just a month ago. I'm seeing an EP who has knowledge of POTS, which I'm thankful for because my general cardiologist seems a bit clueless and totally misdiagnosed me and I was a week away from ablation with another EP. Thank goodness that didn't happen because ablation is not indicated in IST, which was the original diagnosis along with SVT; and contraindicated in POTS as well. Anyway, tilt test pretty quickly diagnosed POTS and around the 20 minute mark also indicated orthostatic intolerance and my EP said it all indicates dysautonomia-obviously, neither diagnosis I wanted. Much more to rattle on about but I really would like to know how on earth it's possible to find the cause of POTS/dysautonomia - I read how important it is to treat the cause and not just the symptoms but my head just spins with overload - mitochondrial, mast cell activation, Lyme, and on and on; where do you even start? My EP doesn't seem too interested in exploring this and keeps talking Mayo, Vanderbilt, etc but I don't know how I would get to any of the main centers-not a fan of flying. Are there any basic tests that might help in possibly finding a cause? My endo is helping when I call her and I've just been diagnosed with hyperthyroidism from apparently too much synthroid so she stopped that for five days and i just restarted at a lower dose and she's ordering some adrenal studies as well. Any suggestions would be greatly appreciated. Thanks! Quote Link to comment Share on other sites More sharing options...
angelloz Posted July 29, 2014 Report Share Posted July 29, 2014 Hello,Wanted to say welcome to the forum! I am 55 also, illness started in 2010. I have been to the mayo and had lots of tests. A mast cell specialist at MUSC diagnosed me with MCAD but the treatments didn't seem to help. Your GP can order tests for mast cell like tryptase etc...I do not know the underlying cause for my autonomic problems but have small fiber neuropathy, hypovolemia and OI. I guess all I can say is chip away at possible causes but it can be difficult. Finding a doctor willing to help you sort it all out is important. You can PM me if you have any specific questions I could help with. Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 29, 2014 Report Share Posted July 29, 2014 Hi and welcome to the forum. It is important for you to find a doctor to help you sort this out. My son spent 10 days in the hospital before being diagnoised with POTS by our cardiologist. My son was started on the normal POTS medications and did not respond to them. After being on them for more than a year, our cardiologist started sending my son to different specialist. My son had many different symptoms and some of them did not belong to POTS.Our biggest clue was his immune system. He was seen by an immunoloigst when he happened to be sick. His T helper cells would not come out to fight infection. So when my son would get a virus, infection, or flu, his medical condition kept declining.My best advice is to go see a specialist that specialises in your worse symptom. What you have to keep in mind is that your worst symptom may be a part of other diseases which will lead you to see other specialist. A good gp should be able to rule out the basic stuff but if they come to a dead end then you will need to seek out the specialist.My son has been through tons of testing and his underlying cause is antineuroal autoimmune antibodies that have been caused by virues, flu, strep, and mycoplasma p. His last testing revealed the antineuroal autoimmune antibodies that are caused by strep bacteria. Strep bacteria is know to cause heart problems.When I first started using this forum, I would do many searches on many different illness and most of them would show up. There is a wealth of information about testing and specific illnesses that our members have written about in their post. I wish you well in your searches and don't hesitate to ask questions. Many members on the forum are searching for underlying causes, some have learned to mange their POTS very well with medication, diet, and exercise, and some like my son are trying new treatments to get the underlying condition under control. Quote Link to comment Share on other sites More sharing options...
writerlymom Posted July 29, 2014 Report Share Posted July 29, 2014 Welcome to the forum, Newold. : ) When I was first diagnosed with POTS there were some tests my cardiologist ordered immediately including paraneoplastic panel (blood drawn here but tested at Mayo) and a series of autoimmune blood tests- Lyme and I don't remember what all. You'll probably see in scouting around that in addition to all of the screening tests you'll want to check your vitamin levels and iron and ferritin. Maybe you have something hormonal going on too? I'm sure you'll receive many helpful responses here but you also could consider a phone consult with Dr. Blitshteyn in Buffalo- she has a web site- and she could recommend a workup for you. I think the dinet site also has a list of physicians in different states who are familiar with dysautonomia. Hang in there- this syndrome is different for everyone and from what I understand the "rule" is improvement, it just takes time. Sending warm thoughts. Quote Link to comment Share on other sites More sharing options...
Raisin Posted July 30, 2014 Report Share Posted July 30, 2014 Hello and welcome! I found that most of my cause type testing was and is being tested by my neurologist. So far no luck in a specific cause for me but I did get testing at Cleveland clinic also from dr. Jaeger regarding the vascular part of my Pots as well. (hypovolemia, blood pooling, etc.). It can be overwhelming IMO to try to understand and figure things out but the biggest problem for me was actually finding docs that are willing to invest in your case and keep on searching. I pray that you find a good team to assist you. And, there are lots of great tips on here too! Quote Link to comment Share on other sites More sharing options...
corina Posted July 31, 2014 Report Share Posted July 31, 2014 Hi Newoldpotsie, welcome to the forum! Quote Link to comment Share on other sites More sharing options...
writerlymom Posted August 1, 2014 Report Share Posted August 1, 2014 Hi again,Came across this- maybe you've seen it.http://www.dysautonomiasos.com/#!pots-the-basics/c19qi Quote Link to comment Share on other sites More sharing options...
Newoldpotsie Posted August 8, 2014 Author Report Share Posted August 8, 2014 Thanx for all of the welcoming good wishes and information. It is overwhelming at times but all we can do is keep pushing ourselves and our doctors- I've think I've p$ssed off a couple of my docs with my calls - one actually said I was "disturbing" the practice with my calls and questions but when you can't get in to see her for 3 months, yes I'm going to be calling for information on lab results I don't understand; ugh, anyway, I will keep trying to find doctors that are even interested in POTS/dysautonomia in my area but it's not going to be an easy task for sure. Quote Link to comment Share on other sites More sharing options...
corina Posted August 8, 2014 Report Share Posted August 8, 2014 Newoldpotsie, here's a link for you to DINET's Physician list. Maybe this might help you find someone in your area!http://www.dinet.org/index.php/physician-list Quote Link to comment Share on other sites More sharing options...
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