New symptoms

[peptobysmol]

Hi CB,
I have been lurking on this board and posted a couple of times. I have many of the same symptoms as you in regards to the random twitching, muscle fatigue and at times generalized weakness. I have had episodes (sometimes many months in between) of the need to "take deep breaths" and have the feeling that I can't fully expand my lungs. I also have difficulty swallowing small pills and have some difficulty swallowing all the food in my mouth on the first attempt.
Many times I have convinced myself that I have BFS only to have a "new symptom" emerge or an old one (like my breathlessness) resurface. I have had many MANY tests and no definative diagnosis. The breathlessnes or feeling like I can't take a full breath is what brings me here again. I can elicit a deep breath at times if I try to yawn or support my arms on something to help push up my shoulders. Sometimes I wonder (wonder mind you) if i don't breathe enough when I don't think about it and this causes the sensation of needing a large breath. I don't know, but it is "anxiety" provoking. I do get somewhat short of breath with exercise but I'm in not near as good of shape as I was 8 months ago before all this started.
I was wondering for those that have had some of the respiratory difficulties if this was something that you experienced.

Thank you all for your time reading this. Grampy told me long ago when I first posted that it WASN'T ALS. I think he is right, but I am desparate to find out what is really going on with me.

 

[CB1977]

Pep- I can certainly relate. How old are you? How long have you had symptoms, and have neuro's gave you anything to go on? Have you had EMG? ALso- does your tongue look different in any way?

I have had many of the exact same issues. The crazy thing about my symptoms is that I have bad days and I have good days. I have days where swallowing has issues in terms of mucos buildup and coughing and days where it isnt really bad. I have days where breathing acts up and days where it doesnt. I have days where I feel really run down for no reason. I am not really sure if I have progression or if I am staying the same. If I do have progression, it is reletively slow right now.

I have had 3 "normal" EMG's in 8 months by 3 different neurologists (one local, one OSU, and one Cleveland Clinic.) I currently dont think I have ALS, I am looking into MG. I will keep everyone posted if I find out something new. I am going to a specialist next week at OSU about my breathing issues. I believe I have actually had symptoms since at least Sept 2007 so this has been going on for a long time. It started with back pain and stiffness and has progressed to what it is now. I am only 31 and have had symtoms since I was 29. I wish I could tell you more but no Dr. has given me anything to go on except "I dont think you have ALS" based on the negative EMG and no clinical weakness. I just hope I dont have Bulbar, I guess you can have clean EMG with Bulbar. I guess only time will tell as I have exhausted most options available as to finding out what is wrong with me at this point in time.

 

[planningguy]

CB and Pep,

Have either of you had a pulminary function test? I was just curious because during certain activities I have shortness of breath too, but my sleep study showed no restriction, and my blood O2 stayed within normal range. This was last April.

From what I understand, some associated symptoms that indicate a problem are dizziness, morning headaches, and lethargy.

Just curious,

Robert