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Old 02-16-2013, 05:11 AM   #16
indimom
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Update. I did find out that the nodules they left in my lung has started growing again. I was able to get appointments (many thanks to my company health advocate) with University of Cincinnati Medical Center. Hoping I will soon be on the path to a healthier me!
Good Luck and I hope you have a better response this time.
Edited to add: have you checked online for a support group? It took me a while, but I found a facebook group devoted to the ocular version of this disease, and the folks on there have been invaluable for information, advice, and tips. Maybe there is another group devoted to histo, and they would have more advice for you? Just a thought.
Again, Good Luck. I hope you are feeling much better soon.
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Old 02-17-2013, 09:16 AM   #17
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Good Luck and I hope you have a better response this time.
Edited to add: have you checked online for a support group? It took me a while, but I found a facebook group devoted to the ocular version of this disease, and the folks on there have been invaluable for information, advice, and tips. Maybe there is another group devoted to histo, and they would have more advice for you? Just a thought.
Again, Good Luck. I hope you are feeling much better soon.

Thanks, I never thought of a support group. I will check into that, I know that a lot of times those folks have the best information (not to mention support). That was a great idea!
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Old 02-17-2013, 11:30 PM   #18
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Thanks, I never thought of a support group. I will check into that, I know that a lot of times those folks have the best information (not to mention support). That was a great idea!
Your welcome!
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Old 02-25-2013, 07:29 PM   #19
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Update

I was told by my doctor that part of my pain is caused by Adhesions. Due to the multiple surgeries I have had from my belly button to my neck "nothing is in the correct place anymore". Now they think that my lung may have connected via scar tissue to my chest cavity causing the pain. I go to pulmonologist tomorrow so wish me luck. I will post an update as I get them.
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Old 02-26-2013, 01:05 AM   #20
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I was told by my doctor that part of my pain is caused by Adhesions. Due to the multiple surgeries I have had from my belly button to my neck "nothing is in the correct place anymore". Now they think that my lung may have connected via scar tissue to my chest cavity causing the pain. I go to pulmonologist tomorrow so wish me luck. I will post an update as I get them.
Good Luck. I hope you get some relief soon.
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Old 02-26-2013, 05:09 AM   #21
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Good Luck. I hope you get some relief soon.
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Old 02-27-2013, 01:22 AM   #22
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I hope you got some good news at your doctor's appointment (I popped on hoping you would have an update... hint, hint... ).
Em's heading back to her retinal specialist tomorrow. She's having visual disturbances that may indicate another bleed. Stable for almost six months, everything fine, then overnight, it pops back up again. Grrr.
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Old 02-27-2013, 05:31 PM   #23
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Sorry for not posting an update sooner, my appointment was actually today not yesterday. The doctor was great! She spent almost 2 hours with me. She was also amazed that an Infectious Disease Doctor was not consulted last year before I had my two surgeries. This was the lung doctor, I see the Infectious Disease doctor next Friday. She ordered several lung tests and additional blood work for me. I have to be at the hospital tomorrow and depending on the out come of those test I may be kept (fingers crossed not). The nodules in my lung has not just grown they have almost tripled in size in less than a year (she was very concerned about that). She is also concerned with all the swelling in my throat. I will post an update when I have one. Fingers crossed I am FINALLY on the path to recovery and soon back to my commando ways at WDW!!!!!
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Old 02-27-2013, 11:02 PM   #24
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Sorry for not posting an update sooner, my appointment was actually today not yesterday. The doctor was great! She spent almost 2 hours with me. She was also amazed that an Infectious Disease Doctor was not consulted last year before I had my two surgeries. This was the lung doctor, I see the Infectious Disease doctor next Friday. She ordered several lung tests and additional blood work for me. I have to be at the hospital tomorrow and depending on the out come of those test I may be kept (fingers crossed not). The nodules in my lung has not just grown they have almost tripled in size in less than a year (she was very concerned about that). She is also concerned with all the swelling in my throat. I will post an update when I have one. Fingers crossed I am FINALLY on the path to recovery and soon back to my commando ways at WDW!!!!!
Sorry to hear about how bad it has gotten over the year, but it's good you have found a doctor to take your complaints seriously and who is trying to get to the bottom of this. Good luck with the rest of your tests tomorrow (today? lol)...
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Old 03-20-2013, 06:15 PM   #25
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Quick update

..not much new to report. New tests were ran at University Hospital and they came back positive for histoplasmosis. Infectious Disease Doctor wanted me retested so I am waiting on those results. Symptoms seem to be a bit better . Family doctor game me a muscle relaxer to help with my adhesions and it had made a world of difference.
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