pooter18 Posted February 4, 2015 Report Share Posted February 4, 2015 i have delt with POTS/autonomic nervouse system dysfunction/sinus tachycardia for over 20 years..i went to Mayo in 2010 and they helpd me out a lot..got me off the meds that were making me sicker and started me on meds that have worked fairly well till now..i guess i just kept thinking i have managed to deal with this for 20 years and have learned to listen to my body and notice any changes occuring and able to adjust my meds to my needs (with my doctors permission)....even though it has been hard and i cannot always do the things i want i have managed to a work around my health issues..always thinking one day they will find the cause and possibly a cure..however things lately have not been so good i have now been diagnosed with autonomic atrophy & possibly going into systems failure..i have not gone to get any of the test done yet to see exactly where i am..but i know my disease has changed a lot this past year and i am sicker than ever..it is like it has just all hit me hard now and i am scared and fearful of the future..i never let it bother me before....so i guess that is why i haven't gone to do the testing but my doctor is understanding and is not pushing me..you would thinkk after 20 years i would of come to grips with the disease (as i call it) ..i did not have any procedures done over the years due to all of them being basically experimental like ablation..pace maker in the stomach for digestive problems and many more and i have to say i am glad i refused since some of the prcedures done have actually caused worse POTS symptoms for some people..i do get the IV therapy..i guess i am looking for others that are in the stage i am or further advanced to tell me the truth ..i realize we are all different and we progress at different rates..but my doctor only has 3 of us and the other 2 are younger and have just been diagnosed..and he isn't knowledgeable enough or just won't tell me..but i can see it in his face that not all is well..so if anyone has any information they can share with me i would appreciate it..even though i said i am fearful at this stage i would appreciate the truth so i know what to expect and can plan in advance..i would of written this better years ago but my brain fog keeps me feeling like i have the intelligence of a kindergardner and makes writing and thinking hard for me..thanks in advance Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 5, 2015 Report Share Posted February 5, 2015 Did he call this Multiple Systems Atrophy? Did he call it Shy-Drager? Parkinsonian or Cellebellar? Sounds as if you need another doctor who knows more about this condition. Is your doctor an Autonomic Specialist or Neurologist? How old are you, if you don't mind me asking? All these questions are for you and maybe myself and others, as I was first diagnosed with Pure Autonomic Failure, but went 13 years without a diagnosis, so it's been about 16 and half years for me all total. To be honest, I'm afraid that this will be me in a couple of years...sorry, I really feel for you. I'm a retired RN, and not on here, as much anymore, because I support others on other sites. Please ask your doctor some more questions. Quote Link to comment Share on other sites More sharing options...
pooter18 Posted February 5, 2015 Author Report Share Posted February 5, 2015 multiple systems atropy with possible onset of multiple systems failure..he is a cardiologist but not a expert on this autonomia..i am 50..first symptoms around the age of 27..diagnosed at age 37.. but went to mayo in 2010 for a definate diagnosis..i am having problems with swallowing and more extreme problems with my digestive system..i am getting a GI appointment made to see how well my GI system is working..taking nausea medicene daily right now and has been 7 days today since i have been able to go to the bathroom and counting..i have even drank the colonoscopy prep and NOTHING...the problem with finding a doctor i live in a tiny town and have checked around and no one has any experience at all with this so they wont take me even though i have good insurance...i did find one with a little knowledge but my first visit he talked about potty training his son instead of finding out about me..did not ever go back...feel like i am sliping through the cracks here and should be getting some better care..well i will keep checking back and see if any more ideas come in..thanks so much Quote Link to comment Share on other sites More sharing options...
corina Posted February 5, 2015 Report Share Posted February 5, 2015 Hi pooter, welcome to DINET! I'm sorry you need to deal with this. Don't worry about your writing, we know and understand where you are coming from. Hope you'll be able to find a doctor who will give you the answers you need and is able to work with you. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted February 5, 2015 Report Share Posted February 5, 2015 When my heart began to fail in 2006, my cardiologist diagnosed me with Multi-System Atrophy (MSA) - Shy Drager's. He told me to get all my affairs in order and to expect to decline with death in a couple of years. He had a small part of the diagnosis correct - autonomic failure. Once I was properly diagnosed with AAG, it all made more sense to me. Shy Drager or MSA has a rapid progression with death in less than 7 years from diagnosis. It is not a slow disease and does not start years in advance of a diagnosis. If you have had symptoms for many years, chances are it is not MSA. It sounds to me like you need more testing - especially antibody testing to see if you have an autoimmune autonomic dysfunction. Virtually every organ system is involved when autoimmune antibodies are involved - they attack the nervous system and nerves that innervate every organ. In my case, they especially like my cardiac nervous system. Treatment of autoimmune autonomic failure is symptomatic and a combination of IVIG or plasmapheresis. In some cases, immune suppressors are added.I just wouldn't chalk everything up to MSA unless you have the appropriate specialist diagnose you after the appropriate testing.Good luck and keep us informed! Quote Link to comment Share on other sites More sharing options...
pooter18 Posted February 6, 2015 Author Report Share Posted February 6, 2015 thank you will check this out on the internet and talk to my doctor ..he did suggest i go to Vandebilt due to him not being real knowledgeable .. but i went to Mayo in 2010 (i believe it was then again brain fog) so i didnt feel the need to go to another hospital..although i have read they are doing a lot of studies on this if i was closer i would definately go for the studies so it might help someone else out.. Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 6, 2015 Report Share Posted February 6, 2015 pooter18, I hope that you are able to see someone that specializes in these disorders. I also had a doc that wrote possible MSA in my records. That is not the case. These illnesses are difficult enough to not get good diagnoses and treatment. I do not know where you live, or what Mayo you went to. They are not all the same. Maybe you can go back, especially that you are in the system. It might not take as long to have a follow up. I do not know what is best, but I wish you the best. It would be good to here how it goes for you. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 6, 2015 Report Share Posted February 6, 2015 E Soskis, you had AAG antibodies? Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 6, 2015 Report Share Posted February 6, 2015 E Soskis is right about the slow progression is not usual with MSA, and the prognosis is poor, but if your doctor feels as if your systems are failing, obviously your GI tract should be first priority, you need specialists for each specific problem. Yes, if it is autoimmune, you probably need a rheumatologist, but I agree with Gjensen, that you should probably go back to Mayo, where they first diagnosed you! If it makes you feel any better. I went 7 days once without going, and finally was moving again; I usually have the opposite problem, though. I had my first symptoms when I was in my early 40's, actually 41, and now I am 58. Keep us updated on how you are doing and don't loose heart. I'll be praying for you to find the best doctor for your needs right now!! Quote Link to comment Share on other sites More sharing options...
pooter18 Posted February 6, 2015 Author Report Share Posted February 6, 2015 thanks to all of you will also look up the AAG antibioties..still waiting on them to scheduale GI visit and since i really dont need aproval with my insurance think i will do it myself monday..still miserable..doctors office's are to slow..unless it's themself that needs a specialist..thanks again Quote Link to comment Share on other sites More sharing options...
E Soskis Posted February 8, 2015 Report Share Posted February 8, 2015 Sue - yes - I tested positive for the antibodies - I was told they were extremely high but, I don't know the values. Quote Link to comment Share on other sites More sharing options...
TCP Posted February 8, 2015 Report Share Posted February 8, 2015 Has anyone looked into the gluten link with MSA? I wonder if there is something in that as gluten attacks nerves. Quote Link to comment Share on other sites More sharing options...
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