$10,000 for Gentetic Testing
So it was the end of August of 2011 and I can not describe how I was feeling. Getting test results back that said maybe but maybe not is so mentally hard and difficult. Trying to still find out what the heck is wrong with me is very mentally draining. During this time frame I also hade intense pain on the right kidney side. I got an ultrasound and came back fine and all blood work was normal, so they think it was just the muscle cramping in that area. Early September I was trying to figure out if my insurance would cover my mtDNA and...
read moreStarting CoQ 10
August 16, 2011 I had an appointment with my Registered Dietitian (RD). While I was there I was very anxious and nervous because I knew any day now my results would be back from the genetic testing. When I got into my appointment that was the first thing I told her and to see if she was able to see if any results were back. The results were in but she would not tell me the results. I remember looking up at the computer screen and I saw a huge positive word across the screen of the computer. I started freaking out and wondering all...
read moreResults of more Blood Work and Genetic Testing
It is now the beginning of August 2011 and still waiting for results of the genetic Exercise Intolerance Panel and a bunch of blood levels that needed to be taken as well. It was almost fall time and could not be anymore excited because of the weather. I thought once summer rolled around I would tolerate the heat better then the cold. Boy was I wrong. I could not tolerate the heat at all, it made me nauseated and very sick to my stomach. One day I wanted to go to the pool and layout and was out there for 45′ and started getting sick and...
read moreThis Struggle Still Continues…
After my visit with the doctor at Muscular Dystrophy Association (MDA) I had to contact my other neurologist at Uof M hosipital to get my genetic testing done. Which included the Exercise Intolerance Panel for a Metabolic Myopathy. This test would see if I have any genetic mutations in my DNA. He said that is fine and would leave the script for me to pick up any time with his nurse. It is now July 25, 2011 and I finally got the paper work for my blood work and got my blood taken at the hospital. They did the rest for me and shipped it...
read moreMy Visit with The Muscular Dystrophy Association
Well it is now the begining of July 2011 and I could not feel anymore exicted for my appointment with the Muscular Dystrophy Association Clinic (MDA) . To finally get some understanding and a grip on what is going on. It has felt like a whirlwind of these abnormal tests but can not identify the problem still. I was getting so nervous for this appointment…I wanted answers to why I am still having muscle cramps/spasms, muscle pain, weakness, shortness of breath, fatigue, intolerance to exercise and extreme weather conditions, and hands...
read moreWhat I am Happy For?
I am going to go off track for a moment because I haven’t thanked any of you. I want to show my gratitude and happiness for all the followers that are following my journey. When I started this website I wasn’t too sure what to expect from this. I was scared, afraid, nervous, and most of all what will people think of me. I wanted to help just one person by doing this but low and behold you have all helped me! You have all inspired me to post more, write more, and be so honest and open with all my challenges that I have faced in the last...
read moreOne Year Anniversary of Rhabdomyolysis
During the month of June 2011 I had so much going on. So many tests, emotions, flash backs, and overwhelming feelings. All this and so many other tests and doctor appointments, I had my visit to the Register Dietitian (RD) on 6/7/11. When I went to this appointment I felt I was getting better including well balance meals and snacks through out the day. I was trying all kinds of food, especially homemade African food, which is so delicious. My food tolerance continues to improve except when I ate a large quantity of cherries at one...
read moreResults of The Forearm Ischemia Test
It is now 7/1/11 and I got a phone call from my neurologist to call him back and talk about the results. I was so nervous to call back because of all the what if’s. Well I called him back and he started out well the test came out abnormal. So my response was ok can you explain this to me! So I am going to try and explain this the best I can because it can be quite confusing. Well just a refresher I got my blood levels taken of Lactate, Pyruvate, and Ammonia at baseline (before the test started). Then they took off the blood pressure cuff...
read moreAfter Affects of the Forearm Ischemia Test and Round Two
The next two days 6/24-6/25/11 I did not feel like waking up at all. I was so exhausted and I had that dead feeling in my body. (like I used to when I was really sick) Starting to bruise in different places on my body from EMG and did not look attractive at all. Got this huge bruise on my right hand web space between your thumb and index finger. My left gastroc (calf) seemed to have more cramping where they inserted the needle. By 6/26/11 I can not tell you how exhausted I was. It took me the whole weekend to recover from both of these tests....
read moreElectromyogram
Well after I got my muscle biopsy results I had to go back to the neurologist in two weeks to get my electromyogram (EMG) . During these two weeks I was very anxious because I still didn’t know what was going on with my body. I just wanted to feel normal for once and do all the stuff I used too do. It felt never ending. So now it is mid June and I thought the warm weather would be great for me. But I was wrong. The hotter it got outside the worse I felt. I could not tolerate the heat, it would make me nausea, sick, dehydrated, muscle...
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