It took a year and a half for my diagnosis. It has since been confirmed by a second ALS doc. They did not want to believe mine was ALS and struggled to understand the breathing test until they had me lie down and try it. I was at 135 percent on the test sitting up but dropped to 70% lying down. You should insist they do this.
I had three EMG's and all three reveled long term nerve degeneration and active nerve degeneration.
My breathing problem is only upon activity, but the necessary activities have gotten less. I can no longer carry a bag of groceries in without completely loosing my breath. My hand have also become extremely weak and clumsy. My legs constantly feel like I just finished a marathon. And the faciculations and cramps never stop.
I hope they find out what is wrong and that it is NOT ALS. This is the most helpless I have ever felt.
John, I just read your first post and if your emg's were negative -you probably do not have ALS. Look at it this way - your chances are about 99,999 to 1 that you are NOT among our ranks. Most of us never dreamed we had ALS ... I'm surprised by how many people assume it or are afraid of it. Don't get me wrong - it's the beast - but strikes very very few of us. I truly hope you are among the lucky ones.
I wish I could offer information but I only am familiar with the neurologist in Pittsburgh we are seeing.
I think if I were you I would consider a Pulmonologist? or respiratory therapist?? (I say this with no medical knowledge of course) because breathing trouble is the only symptom, right? My husband actually first started with a limp and tremendous weight loss (45 pounds on a smallish man) ... the breathing was not an issue for many months - maybe even 6-12.
Waiting for another EMG and then a follow up in two, however, by the way the last couple months have gone, I am worried about how much more motor loss is going to occur. My pinky and ring fingers went from a little twitch to now being curled up in less than a month.
Anyway, I feel you, been to 5 neuros. They seem to acknowledge there is a problem but don't really offer any solutions. I have a naturally super athletic build so they usually tell me from the get go that I look too good to have anything seriously wrong. I've been hacking at this since Feb, just want to know what it is, even if I is bad...that way I can just screw everything and go on a cross country road trip or something...I don't want to wait until shit really sucks to find that out. Hopefully we both have some mysterious thing that can be fixed with a couple rounds of treatment...here's hoping.
Weird though cause I first noticed sensory stuff, like buzzing and some tingling...that has pretty much subsided and now I just have the twitching and weakness. Saw a doc today who said he would suspect ALS however the sensory stuff doesn't make sense when he looks at the big picture. I've had some minor mouth/throat issues since winter and it's been kicked into gear the past few weeks. One of my docs said my tongue looked weird, and when I looked at it, it looked like the tip was cut off and it shrunk. In the past few months have had constant mucous buildup, have developed a lisp, a lump in my throat, hoarse voice, tongue feels sore, some breathing troubles, and a super weak cough. Just chalked it up to a cold but nothing works. A little worried about this new development.
I originally thought MS but am somewhat concerned about ALS. I am extremely in tune with my body, have been a bit of a gym rat/health nut for past couple years. Never been the hypochondriac type. In the gym there are mirrors everywhere, I can definitely see a change in muscle tone in certain parts of my body...nothing enormous, but definitely spots where it looks like muscle is missing, especially in forearms and around my knees and the sides of my back, hands and feet are really bad...my legs are starting to feel like jello when I walk, when I lift myself up, my arms will shake, my abs shake when bending forward. I'm just a little confused because it's spread all around my body, not sure if ALS works that way...a little bit in each limb. Wouldn't think so, but who knows. I definitely have constant twitching, and the twitching has been confined to the places where I have noticed the atrophy.
Saw another neuro at jefferson hospital really nice guy told him my story amd he is going to do an intercostal emg and all other parts of body including bulbar area on sept 9 finally a neuro that really listens and cares
John, I sent a public post, but I don't know if it will go through. I would be more than happy to chat with you with the other support group that I have been a member of for quite some time. My signon there is cptweaver at dailystrength.org. I am a member of the Myasthenia Gravis group, and the people are very nice over there. I am a big boy, but the way they treat new people in this group is just not for me. I just don't have time in my life for this kind of childish H.S. BS. I look forward to hearing from you. Also, you can reach me directly at [email protected] if that works better for you. I look forward to chatting with you if that is what you would like. Scott