I don't know if our story will help, especially since at your point in the journey, you probably only want to hear the positive stories, and I don't blame you. Our story does come with some hard won advice, might be worth the read,
In 2011 we found a tumor in my husband's lung, cancer. He had surgery, they removed the lower right lobe of his lung (who knew that we have 5 lobes!) his pulmonologist kept telling him that he wasn't recovering fast enough, 80 year olds recover faster he'd say. We agreed, and because my husband Raymond had some other odd things that were happening to him, we began nearly three years of searching for a diagnosis. After his surgery, he began to have tongue spasms and bouts of painful yawning which caused very painful neck and jaw cramps. Within 6 months he began to have the muscle faciculations that looked like worms under his skin. Before too long those worms were everywhere. He had several normal emgs, tons of blood work, X-rays, MRIs, we saw three different neuros, and finally ended up with the diagnosis we were afraid of all along, ALS. When he was finally diagnosed, February 19th, 2014, by the head of Loma Linda's neurology, we felt devastated, but certain it was a correct diagnosis. Now for the retrospective advice, searching for a diagnosis was frustrating, tiring, disheartening, infuriating, and for my husband, who was suffering from the symptoms, all encompassing. During those three years we stopped living the life we had previously enjoyed, so focused on finding out what was wrong, time slipped past us both. You have to find out of course, you have to pursue treatment, but don't let the time slip by wasted, live for each moment, really live, and then no matter what the diagnosis, you won't have any regrets. Many blessings to your family, thanks for letting me share.
