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Muscular Dystrophy Message Board
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Old 02-10-2010, 01:26 PM   #1
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karel HB User
I could use some advice please

This is a long story, but I will be as brief as I can. I have an 18 year old daughter who has been very healthy all her life until the last year. She is very tall, thin and athletic. She was a dancer, dancing 2-3 hours per day 3 days per week until the dance studio she attended closed. She then went into cheerleading at her school. In January 2009, she was hospitalized due to passing blood through her intestines. Numerous tests were performed which did not reveal any disease, parasites, etc. She was released after 3 days and we were told she probably just had some sort of bacteria. When she was in the hospital those 3 days, she started having neck pain. She saw a chiropractor for a while which seemed to help it. The neck pain would just flare up on occasion. Then, last September at a routine physical, her PCP had her do 10 jumping jacks and her heart rate went to 180. She immediately made her an appointment to see a cardiologist. The cardiologist put her through a long list of tests both here in our town as well as Emory in Atlanta. He told us initially that she appeared to have cardiomyopathy caused by a virus. However, when a cardiac MRI was done in Atlanta, her heart did not show any signs of heart damage and her heart was functioning within normal ranges. Her heart rate still goes too high with minimal exercise and they are baffled as to why. So, her cardiologist consults with another cardiologist and he believes that my daughter could have some sort of muscular disorder. I need to back up a bit and also let you know that my daughter has "lazy eye" and has 2 surgeries to correct her eye muscles. Each time, it only lasts for a short while. She needs the surgery again. Also, in the midst of all the heart issues, she began having GI problems (the same as she had the previous January) as well. We were sent to Atlanta to a GI specialist for numerous tests. When he did an upper and lower GI, her stomach was full of ulcers but her colon was clear. (Her GI problems have been much better the past 3 weeks). They are now going to schedule some sort of video test to hopefully find out what is wrong with her digestive system. This past Monday, I took her to see a neurologist because she is still having some shortness of breath, tires easily, sleeps alot and has terrible pain down her neck which also causes massive headaches. She has also lost weight but I think that is probably attributed to the GI issues she had earlier. The neurologist sent her for a complete blood work up. I bet they took 10 viles of blood from her. We go tomorrow for an EMG test. I have been reading these boards for three days and it is so scary to see all the muscular disorders that are out there. I am hoping and praying that they can find out what is wrong with her and she can be treated.

 
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Old 02-13-2010, 08:04 AM   #2
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Join Date: May 2007
Location: Florida
Posts: 203
NP74 HB UserNP74 HB UserNP74 HB User
Re: I could use some advice please

Hey

I am not sure if I can be of any assistance to you. You are understandably scared, and I can do nothing to diminish your fear. Muscular disorders are scary, nasty, evil I can keep going.

All I can say is that I am thinking about you, and hoping that whatever is wrong with your daughter, that it is treatable.

I am not a religious person, so I cannot pray for you, but I am sending you all the positive thoughts and best wishes I can.

Hang in there!

P

 
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