i was dx april 2000 with tm, c2-c6. i had some initial lung involvement which improved. however, i always felt like something was sitting on my chest and had a hard time breathing into my upper lungs. for 6 years i complained of this symptom. a physical therapist once commented on how my diaphragm didn't seem to move right. i suppose because i was able to get around it didn't get looked at more closely. i had major fatigue. last fall i decided to have shoulder surgery on my left shoulder which started hurting with the tm onset. through a series of weird comments by my surgeon i ended up at a pulmonologist(who did nothing but tell me my problem was because i am fat) and finally a respiratory therapist who got me tested . my o2 levels usually ran around 90-92 with that little thing they put on your finger. i had an arterial blood gas drawn, which didn't hurt because i don't feel anything under my skin. it was 58. it should be 90-100. however to get on home oxygen it needs to be 55. i couldn't believe i was just suppose to live with that, so i kept calling them looking for something more i could do and then they ordered a walking test, my o2 level goes down as i walk, quickly and that qualified me for home oxygen. there wasn't enough o2 in my blood to go to my big muscles when i walked or moved around. i guess our bodies save back enough to cover the heart and brain. i wonder about the brain part. my diaphram muscle doesn't move correctly so i can fill my lungs properly. within hours i felt like i could take a deep breathe and the weight was lifted off my chest, i have had almost no muscle cramps(i was having many). it feels like a little miracle. i had to really fight to make this happen, it took 6 1/2 years. i just wanted to pass this along for others who may have the same problem. and to say please continue to advocate for yourselves.doctors don't live with what we do and we know our bodies better than they do and sometimes you just know there's more to be done. it's hard, especially when we have no energy. sue
