Diagnosis Eludes Us- So Frustrated
At 19 I noticed my daughter holding her chin up all of the time and she stopped singing around the house. She had trouble swallowing and chewing. Since then she has been on puréed food diet now for 8 months. Her Anti-Musk was a low positive as well as her ANA test. Her single fiber EMG came back borderline. Doctors won’t take us seriously because of her age and that she’s a female. Anybody else gone through what seems an impossible feat to a diagnosis?
Worried Mom
Fortunately my doctor is taking my symptoms seriously, but so far I am seronegative. I just went for my single muscle fiber yesterday- but it makes me feel crazy that the diagnosis is not confirmed. I am taking prednisone and mestinon, which helps and has allowed me to continue to work. But I certainly feel the frustration of an elusive diagnosis
I'm sorry to hear this. My complaints were ignored for over a decade from the age of 11 till almost 22. I had eye surgery performed on me for double vision at 12 years old which did little to help the problem. Finally diagnosed at 22 or 23 years old and went through all the tests over and over. Most came back as negative.
Switch doctors anytime you feel uncomfortable or ignored. Please go for the best care you can get as I look back and think how much better my life would have been if I had the right doctors early on. I'm not complaining as I have lived a fairly normal life. Stay positive and learn to relax as much as possible.
Along with Sally, I send positive thoughts and hope that you get more definitive answers soon. My husband is also seronegative; it took almost a year to get a diagnosis and during that year we felt we were really alone in trying to cope. Even our wonderful primary care physician didn't have enough background to realize what was going on, and the first neurologist we consulted threw up her hands! It took a second neurologist, testing at the largest medical center in the state, and a consultation with Mayo Clinic. Now we look back at the progression of symptoms and say "Of course." From our family and the community at large, support and encouragement to persist! And in the interim, take very good care of her general health because of course, it all ties together. Juliana (Myasthenia-gravis.com team)
I am so sorry that the Dr.s are not taking you seriously!! Sometimes it take repeats of testing for positive results when early in the disease. Some of us are seronegative meaning nothing shows in our blood work. Some of us also test negative on the single fiber EMG. To answer your question of... Anybody else gone through what seems an impossible feat to a diagnosis? It has taken me 48 years to get diagnosed. My symptoms started at age 10. I was 58 when diagnosed, Oct. 2020. Hugs & Best Wishes to both of you!! Hoping you get answers soon!! Sally (Myasthenia-Gravis.com team member).
