My Visit to the Dysautonomia Specialist!

We were so busy and I was so tired last week from all the activity I am now behind on everything I wanted to share. I am going to try to play catch up this week and first up is my trip to Case Western Reserve to see the specialist last Tuesday. In short, the visit was amazing. It is hard to convey to someone who has not been down the path of chronic illness but let me try. I first started getting sick 11 years ago when I was 19. It all started after a bout with mono the end of my freshman year of college (gotta love living in tight quarters in those dorms). It took months for the mono symptoms to go away and from that point forward I started having strange health issues. More and more symptoms were added as time went on and every time I would get the flu things would get exponentially worse and then stay that way. I went to so many doctors and no one knew what was wrong. Most often they would diagnose me (incorrectly) with anxiety disorder. Just so happens the meds they give to treat anxiety disorders make dysautonomia (what I have) worse. I got worse and worse over the years and started to wonder if I was crazy. After a bout with the flu in 2006 I developed the heart symptoms of the disease and ended up in cardiac intensive care. After discharge I finally saw a cardiologist who correctly diagnosed me but had limited means to treat me. This continued until Tuesday. I saw doctor after doctor who understood (at least partially) what was wrong but really didn’t know what to do. I became my own advocate, tirelessly researching and I found out there are only a small handful of specialist in the country and most of them are at Mayo Clinic or Vanderbilt University in Tenessee. There are two specialist in Ohio, one was more suited to treat my specific situation. I saw a neurologist at Ohio State that referred me to this specialist in Cleveland and informed me to expect to wait at least a year to get in to see him. This brings me to Tuesday. I met him and it was a dream come true. He understood all about what was wrong with me, he knows just what I have been through, he understands the impact this has had on my daily living, my family, my relationships, my marriage, my self image, everything…. he understands. He not only treats this condition but is one of the leading researchers on it. Most of the new info coming out about autonomic dysfunction is coming from his labs. He was just as happy to meet me as I was to meet him. He said I am exactly what he looks for in his research candidates. As soon as I have the baby I plan on participating in his research studies so him and his colleagues can learn even more about the disease. He is limited in how he can treat me because of the pregnancy, and I knew that would be the case, but he is optimistic he can get me to a much better place with this disease! He talked to me for at least an hour and a half and at the end of our meeting the most amazing thing happened… he asked if we could pray. Now I am well aware this would be a huge turn off to many people but to me it was the icing on the cake. He held my hands and prayed that God would lead him in the ways he should treat me and that better yet I would receive healing and not even need his help. Then he asked if I wanted to pray. I prayed thanking God for every twist and turn in my journey that led me to this physician and for restoring hope where there had been none. Then the dam broke and a river of tears flowed down my cheeks and the doctor gave me a hug and I felt more grateful than I have felt in a long time. It was a very good day.

* I try to keep information about dysautonomia and my treatment in general terms here, realizing most my readers are not afflicted by the disease and are probably pretty uninterested in the specifics. If, however, fellow potsies, or spoonies, or anyone else going down this path happen to wander over here from some of the many online support groups I participate in please introducce yourself! Email me and I will be happy to share specifics of my symptoms/disorder/history and treatments, etc…

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5 thoughts on “My Visit to the Dysautonomia Specialist!

  1. Hi Jen! I just stopped by your blog because I have no motivation to work today. I had no idea I’d end up crying happy, sad, and then more happy tears! I love the note you posted for Roland on his first birthday. My heart echoes yours every time I look at Amelia. I couldn’t imagine a love more powerful than this. I’m so happy for you on finding the new doctor and for your pregnancy. You and your precious baby are in my prayers!

  2. I love your post. It reminds me of the intense and overwhelming feelings I got after meeting my dysautonomia specialist. She was able to tell me about me without my having to explain anything (and u know how we dysautonomia patients get tired of repeating our story to each new face.). I am so happy for you!

  3. Yay Jen!!!!! I am soooooooooo happy for you that you finally have some hope again! Thank and praise God that he has answered our prayers and sent you someone that really understands and has the full capacity to help you! It’s about time some good things started happening with all this! I think this calls for a big WOOOOOOOO-HOOOOOOOOOOO!!!!!!!!! 🙂

  4. GOOD for you Jen! I’m really happy for you that you’ve found the path you need to hopefully get yourself cured! I hope your upcoming journey leads you to better health and happiness.

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