OT-Degenerative neuromuscular diseaseYesterday I went to have an EMG done and other nerve conduction and muscle studies. They were all borderline abnormal.
The blood test is called Acetylchol Recep Bind Ab w/rfx,
AChr Binding Abs, serum
Negative is 0.00-0.24
Borderline is 0.25-0.40
Positive is 0.40 and up
Mine is 0.43
When I looked it up, it indicates a neuromuscular disease called myasthenia gravis-also an auto immune disorder.
The doc. is also sending me to have a chest CT. I looked up the codes on the script and he is having me evaluated for a tumors called thymomas.
I feel God will provide and take care of me, but it is a scary feeling that one day I might be totally disabled and not be able to care for Meggy.
I know there is always possibility that these test are wrong, or misdiagnosed, and I will keep looking for that. The neuro was also looking at a couple other degenerative muscular diseases.
I called Megan's genetic doc. and she is going to evaluate me for Mitochondrial disorder as well. She said that she will see me in February and push for a muscle biopsy sooner rather than later. I hope that she can get it done and that we can figure this out.
The neurologist wanted to play the wait and see game and just retest my blood and muscles in 1 year, and I am just not comfortable with that.
At least if it is this autoimmune disorder, there is chance for treatment that may even help the other two autoimmune disorders I have (interstitial cystitis and endometriosis)
The worst part is knowing that it is an aquired autoimmune disorder that came along with my cesearean. Can't help but to ask if the hospital that delivered and nearly killed my Meggy also gave me a debilitating disease.
I will continue to live life and make sure to find many things to enjoy in life daily and hope for the best. I believe truly that laughter is the best medicine. I also know that no matter what happens to my health, Meggy deserves the best in life and that means me making the most of every day, every hour, every minute. I guess it is just one more reason to thank God everyday that I am able to get out of bed and move around.
Thanks for reading such long Messages.