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Introducing Myself

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I just want to start by saying that I have already benefited from this forum in countless ways. I have been reading the posts for about a year. I have laughed and cried with all of you. I have been informed, educated, and encouraged. You are all rare gems that do a valuable service that goes way beyond what you may think. You make a difference!

My personal story is very long. I will have to abbreviate it. Basically, I believe I have had some (mild) symptoms of POTS since my teen years. The symptoms became more noticeable about 10 years ago. Then, about 5 years ago, I fell down some steps and injured my back and ribs and I was pretty much bedridden for about 2 months. I gradually got better, but I had very debilitating POTS symptoms each summer. I went to my doctor many times for answers. She did every test she could think of, but she eventually said she couldn't help me. At this point the symptoms started appearing in the spring, fall, and winter as well. I saw a few specialists and they couldn't figure out my symptoms either. I was so frustrated that I prayed for God to give me answers (embarrassed, to say the least, to use God as a last resort). The next day I happened upon a web site which mentioned POTS. I couldn't believe my eyes -- all of my symptoms were listed under this thing called POTS. I printed out some information for my doctor and that got the ball rolling. I saw a neurologist in December who did a poor man's tilt table test -- which just confirmed all of the BP and heartrate readings I had been recording over the past year.

However, the neurologist never followed up on the diagnosis and my PCP was "burned out". I tried to switch to a new PCP and that was a disaster because the doctor thought that all of my symptoms were due to depression (she didn't know anything about POTS). I thought I had hit yet another road block, but just this week I went to see my "old" doctor that I had before we moved. It's a haul to see him, but he is knowledgeable, and willing to learn more, and eager to help. So I guess I'll just have to get used to the car rides, because it's worth it for me to have an advocate. Also, I have an appointment in July with Dr. Anna Hohler in Boston. I was hoping to get in with Peter Novak, but he's scheduling really far out.

I haven't posted yet because I spend most of my unsick time doing things with/for my family. I usually only get a few minutes in the evening to look at things on my computer.

I have good days and bad days. On good days I try to act like a "normal" mom (but even on good days I have limitations). On bad days I am on the couch unable to do anything (can't even hold a book to read, can't type on my laptop, etc.). I have a sweetheart of a hubby and six awesome children (ranging in age from 12 to 23). I have no complaints, really. My husband and children are totally understanding and compassionate. They all help with the cooking, shopping, and cleaning.

I have tons of unanswered questions -- but don't we all?



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Welcome Gloria! Glad to hear you've been enjoying this fourm. It is filled much information and very supportive people. We probably live relatively close to each other. I am familiar with both Dr's you mentioned. Feel free to PM me with any questions. Enjoy yourself here! Hope you find some of the answers you are looking for!

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So glad you found us Gloria, sorry for your circumstances but you are in the right place. I am shocked that you were not diagnosed after a TTT confirmed the hallmark symptoms of POTS. I would keep pushing until you get an answer .. possibly request another TTT. I am so happy to hear that you have a great support system, that is so important! Always know we are here for you as well =)

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