Jen2533 Posted October 30, 2009 Report Share Posted October 30, 2009 Hello everyone,I am new here, not sure yet if I belong but I have been quite sick since Spring 09. I have the doctor's pretty much stumped. My neurologist's best guess is Myasthenia and he started me on a trial of Mestinon at the beginning of October. What intrigued me about Dysautonomia is that when I had my acute attack in June the only medicine I have that made me feel better is my Adderall, I also started spontaneously consuming large amounts of water. When I began to feel a little better on the mestinon (I'm negative for all of the Myasthenia tests but the neuro says there are some people who don't have a positive test and still have mg), I started researching the medicine and found that Mestinon is also prescribed for Pots. I have a pulse oximeter at home and started monitoring my heart rate. When I am laying down it is between 50-70 and when I stand up it raises between 110 - 130. I also have purple toes and leg and finger swelling if I stand too long and have a history of fainting at least 2 times a year since I was a teen. My neuro said they may order a muscle biopsy to look for a Mitochondrial disorder and I noticed that Dysautonomia can be a symptom of that. The other disorder I will bring up is EDS, I meet all of the joint hypermobility criteria and my last CT shows that I have a dialated aortic root. When I looked at all of your stories they rang so true to me. I see my cardiologist next week Friday and will ask him for the tilt table test, I hope he is willing to try that. I'm starting to feel like I am annoying my doctors b/c I feel so lousy and they don't have a difinitive dx or a cure. I'm currently off work as well and want to get healthy enough to go back so bad. I'm getting depressed fighting with the insurance company and trying to explain to friends and family what is going on. I look forward to meeting all of you and hope to find some answers soon.Thank you,Jen Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted October 30, 2009 Report Share Posted October 30, 2009 Hi Jen, welcome to the board. Your story sounds just like 90% of us here. Glad you found DINET take advantage of all the information here, you'll learn more here than anywhere else. Good luck, hope you find somethings to help you. Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 30, 2009 Report Share Posted October 30, 2009 A Warm Welcome, Jen! Based in your stats, you most certainly have POTS and EDS may very well be the underlying cause. You DXed yourself- now to convince the docs You're in great company here. many of us have the same diagnostic story. I hope you get things sorted out and on a better regimen soon. Keep posting!Julie Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 31, 2009 Report Share Posted October 31, 2009 Hi Jen! You've found the right place! We're both glad and sorry that you're here. Keep looking for answers. It's a long process, and some of us have yet to find out why we ended up with POTS/dysautonomia. But most of us do find some relief once the right medication and lifestyle adjustments are made.Welcome aboard!Amy (Mrs. Burschman) Quote Link to comment Share on other sites More sharing options...
shannon Posted October 31, 2009 Report Share Posted October 31, 2009 Welcome! I hope you find the answers you are looking for with your doctor's help. The forum is here for you anytime you need support! Quote Link to comment Share on other sites More sharing options...
Stormie74 Posted October 31, 2009 Report Share Posted October 31, 2009 Jen, You are not alone. I am also new here, and also from Michigan... Perhaps it's something in the water? LOLYes, my doctors all thought I was crazy, too, but I finally found a few who took me seriously and finally got a POTS diagnosis. I also have to have a Cortisone Stimulation Test on Tuesday, and I see my cardio to find out how he wants to treat my POTS on Monday. Hang in there! Quote Link to comment Share on other sites More sharing options...
chipper Posted October 31, 2009 Report Share Posted October 31, 2009 Welcome to this wonderful place, that is soo warm and caring. I care very much and you will find that many of these Dinet members know just what to say to help. Hope you find answers soon. Mary Quote Link to comment Share on other sites More sharing options...
Jen2533 Posted October 31, 2009 Author Report Share Posted October 31, 2009 Thank you for your warm welcomes and letting me know I'm not becoming a cyberchondriac Caron - I see you have Hashimoto's as well. I have noticed (through the myriad of blood tests they have done, in the past 6 months that my thyroid is going crazy. I was Hypo in June, Hypo in July, Hyper in August, Hypo in September, and normal in September...Makes me think it's connected. My Endo says no but my neuro says that my body seems to have more intense problems with each fluctuation. What has your experience been?Thanks,jen Quote Link to comment Share on other sites More sharing options...
Stormie74 Posted October 31, 2009 Report Share Posted October 31, 2009 My thyroid has always bounced around a lot. In fact, I left my last PCP after being with him for almost ten years because he intimated that I was strange/crazy and "messing with my thyroid meds" because there was no reason that it should bounce around like it does. Right I was first diagnosed with Hashimoto's, before I started on meds, I remember falling asleep during the day on the couch. I didn't INTEND to fall asleep, but I did. I would try and wake up, and I could hear everyone talking around me and wanted to participate in the conversation, but I couldn't. I couldn't get myself alert enough to open my eyes or say anything. I'm on two different thyroid meds: Levothyroxine and Compounded Liothyronine. Fortunatly, I work at a Specialty Pharmacy and my meds are much cheaper. Quote Link to comment Share on other sites More sharing options...
StacyRN Posted November 5, 2009 Report Share Posted November 5, 2009 Hi Jen! I'm pretty new too Sounds like you definitely have POTS! And probably EDS also, although I don't know too much about that syndrome yet. I have the same thyroid problem! In fact, they thought all my POTS symptoms were thyroid related for years, but even when the thyroid levels are normal I had symptoms and they couldn't figure that out. But it would go hypo, then hyper, etc. I finally figured out I have POTS on top of thyroid issues. It's an AWFUL feeling when no one can figure out what's wrong with you, and they tell you your levels are normal so you shouldn't be having symptoms! I just found a cardiologist/ electrophysiologist who knows about POTS, but they are few and far between... Try finding an EP cardiologist, I think they know more about dysautonomia than regular cardiologists do. You came to the right place joining the dinet forum! It is a lifesaver for me, and lets me know that I am not alone... alone is the worst feeling... Good luck to you, and let us know how you are doing and what works for you!Welcome Hugs,Stacy Quote Link to comment Share on other sites More sharing options...
StacyRN Posted November 5, 2009 Report Share Posted November 5, 2009 My thyroid has always bounced around a lot. In fact, I left my last PCP after being with him for almost ten years because he intimated that I was strange/crazy and "messing with my thyroid meds" because there was no reason that it should bounce around like it does. Right I was first diagnosed with Hashimoto's, before I started on meds, I remember falling asleep during the day on the couch. I didn't INTEND to fall asleep, but I did. I would try and wake up, and I could hear everyone talking around me and wanted to participate in the conversation, but I couldn't. I couldn't get myself alert enough to open my eyes or say anything. I'm on two different thyroid meds: Levothyroxine and Compounded Liothyronine. Fortunatly, I work at a Specialty Pharmacy and my meds are much cheaper.I can totally relate to your experience, Caron! My endocrinologist couldn't figure out what was going on with me either. Don't you HATE it when doctors treat you like you're crazy, or attention-seeking?! Makes me SO mad! I've been in the medical field for 15+ years, and I'm not so intimidated by doctors anymore... but when I find a good one I am THRILLED! Most endocrinologists I've been to just want to put me on Wellbutrin because they tell me I'm depressed, and the only thing I'm depressed about is the fact that no one will listen!!!!!!!!!Stacy Quote Link to comment Share on other sites More sharing options...
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