I posted a few months ago on this site, but I have a little more information and worsened symptoms, so I just wanted to hear other people's experience with ALS/MNDs. I had several debilitating symptoms that started 3 years ago before the motor nerve involvement, but I won't go into detail for the purpose of this post. I will say that I am being treated for Lyme Disease currently since I had positive bands on my Western Blot and my CD-57 was 20 which is supposed to indicate highly active infection. Regardless of the cause, my motor nerves are involved.
A year and a half ago (January 2006) my right leg started to feel this weird sensation, almost a tingling of the muscle, while I was driving home from work. When I stepped out of my car, I didn't feel like I had very much strength to hold myself, and I started to limp. It seemed to get worse over the next week, feeling a little stronger in the morning, feeling like I could barely walk by end of day. 1st EMG was said to abnormal (not a neuro who did it). Muscle biopsy normal. 2nd EMG in May 2006 didn't show the same abnormalities, but by this time the weakness seemed to subside for a few weeks. It came back again, then seemed to get progressively worse.
I ended up moving in with my parents due to the fact that I felt like I was going to pass out while driving home, and I couldn't function very well. By September, I was walking with a cane, then my swallowing suddenly started to get bad. It came on in a very short period of time, then would seem to subside. I had another EMG in November by same neuro, said definite abnormalities but didn't think was ALS. New neuro that I'm seeing as of beginning of this year is an ALS Specialist and Medical Director of Portland ALS Clinic. She's done several EMGs and said that is has progressed in my arms but that she still doesn't think is ALS. She sees renervation and says that's not typical.
Swallowing difficulties were confirmed through modified barium swallow. Breathing difficulties seemed to come on suddenly in February. I was in the car with my dad, my chest felt this warm tingling and almost slight pressure, similar to feeling in legs. Over about 10 minutes, it felt like I couldn't get air into my lungs. Fast forward to pulmonary test. Neuro said shows reduced lung function but nothing to worry about (yeah, easy for her to say when she hasn't gone to the ER twice for not being able to breathe).
My insurance approved Mayo Clinic, so I'm going to get that set up. This last week was the worst. Starting last Monday, I felt that slight burning, pressure sensation in my chest/abdomen area. Very hard to breathe. Since then, no let up with breathing, hard to get air in all the way. Today was the worst though. I got out of breath just walking to my dad's car with a cane. I started to feel within minutes that each breathe was a struggle just to get air in. My chest and abdomen hurt and almost felt like they were burning (same happened during pulmonary test). Just sitting here, I feel like my scalp is going numb and that I could pass out. My abdomen feels like I did 100 sit-ups.
Sorry for long stories, here are my questions for those who have experienced breathing difficulties due to MND (I know everyone is different). How sudden did it come on, or did you slightly notice it over time? Is there pain involved from not being able to breathe for you? Does anyone have the tendency to hyperventilate by taking too deep of breaths? Do you breathe faster if not feeling like getting enough air? Is it possible to have a diaphragm onset so suddenly when my legs haven't seemed to get worse since last December (my pulmonary function test was just a few months ago)?
I am afraid to go to the ER because they just do chest x-ray and EKG and send me on my way. I try to explain to them that it's probably due to motor nerve involvement but that I just haven't gotten diagnosed. I am so afraid now that I may have respiratory failure soon before going to the Mayo and don't feel like ER is an option anymore. Sorry for the long post, but I'm pretty scared right now.