Hi, Lori. I hope that your husband is doing okay. How frightening for you to take him to the ER and then find out about ALS. How did you know to take him to the ER? How is he doing now? I am glad that the BiPAP is helping him. What is the best sleeping position for him? I am struggling to find a position in which I can sleep without my breathing stopping or me feeling sick and dizzy.
I am scheduled to see my neurologist and my pulmonologist (sp?) tomorrow. The lung doctor will share the results from my recent CT scan of chest, pulmonary function test, and arterial blood gases tests. I feel so scared; my husband is a great support but I have not shared with him the level of my fear. My lungs have been burning for years now (first told my primary care physician before 2005). He told me that I had acid reflux or costa chondritis and then referred me to a psychiatrist for anxiety. I actually had to call another doctor myself to request to see a lung specialist who ran the recent tests that showed that my FVC has declined from 90% to 69%. I KNOW that didn't happen because I was under stress! I think sometimes doctors blame the patient when they can't find a reason for the person's symptoms. It makes me angry and sad because so much time has passed since I first began having symptoms.
Do you know if ALS can ever first show itself as a respiratory symptom? Do my symptoms sound like ALS to you? Bilateral clonus, hyperreflexia, slightly upward moving big toe, breathing difficulties, extreme fatigue, weakness, muscle twitches all over body, skin sensitivity on parts of my face (lips, eyes, chin) and roof of mouth. Lori, thank you for taking your time to answer some of my questions. I have felt so alone and it feels good to connect with someone who understands the disease in a personal way. Laurie