Wednesday, June 15, 2011
After a few of you have asked I realized that I have not given any updates about my recent diagnoses. Yesterday I met with another Neurologist to get his opinion. He quickly diagnosed me the same. He said I showed classic signs of Myatonic dystrophy type one. During the exam he explained what muscles have been effected and which have not yet been effected. He explained that our children have a 50 percent chance of getting this disease. He did not recommend us doing genetic testing for them but feels it is extremely important to have there hearts checked regularly. He had a more positive outlook on things. It has still been a lot to take in. I will be going through more rounds of testing. Sleep apnea, swallow testing, and heart tests. I will continue to work with trainers to try and build up some muscle. I have joined an online support group and I'm trying to learn as much as I can about the disease. I'm giving it over to the lord daily and asking him to use me in every situation to give him the glory. Some days are better than others. The things you can be praying for is wisdom on how to navigate through decisions, an increase an energy levels(we are trying different vitamins and are open to suggestions) and that I would continue to keep my eyes focused on him and not wallow in this disease. Thank you all who have been so concerned and encouraging. I feel so blessed to have you all in my life. We are looking forward to a fun and relaxing summer.