pjm220
Active member
- Joined
- Apr 10, 2010
- Messages
- 47
- Reason
- PALS
- Diagnosis
- 08/2010
- Country
- US
- State
- IL
- City
- Chicago
Hello. I have not received a diagnosed yet, but all symptoms are pointing to bulbar ALS. I am midway through the 3 month waiting period before I see the neurologist again. My symptoms probably started 10 months ago with difficulty in breathing. Primary doc treated me for asthma; all allergy tests came back negative. 6 months ago my speech started to slur, and 4 months ago I developed a peg leg on the left side. It has now progressed to both legs, and I have the perfect “Frankenstein walk.” I choke easily, one side of my face droops a bit, my tongue quivers and pulsates on the sides, I have fasciculations in my upper thighs, chin and lips, I yawn excessively, gag to the point of throwing up when I brush my teeth, and still have a hard time breathing, even when I lay down. I was laughing and crying inappropriately, but I am now on antidepressants, so I think that has helped some. However, once I start to laugh or cry I can’t stop easily, and it sounds really odd… like gulping and gafaws. The cramps are in both legs, but not my arms. And I sneeze all the time… what’s with that?
CT, blood work and MRI have ruled out all that those diagnostics tools can rule out. So, without a diagnosis, my husband and I are treating the symptoms as best we can. I was on Lipitor for a couple years, but went off it to see if it was causing some of the symptoms in the beginning. Primary doc wants to put me back on, but I am hesitant. The posts that I have read here are supporting my hesitancy, in that it may compound some of the symptoms. I am still on the inhaler for asthma, but think I should go off, because I don’t think it is asthma. Anyone have any thoughts?
I am thinking massage therapy for the aches after the cramps and chiropractic to put my spine and hips back in place after the Frankenstein walk. Is it worth it to continue to try to use my NordicTrack ? (I do it slowly and alternate between moving my feet and arms, not both at the same time anymore.) My speech is pretty bad now, but until the diagnosis comes I can’t get into any programs to work on it. My husband is a trained singer and he has worked with me on breathing exercises, and that helps when I cry uncontrollably.
Since the symptoms are so similar to ALS symptoms, I am wondering what else we can to do manage them. Any ideas?
Thanks, and God bless all who are struggling with ALS and all of the caregivers.
CT, blood work and MRI have ruled out all that those diagnostics tools can rule out. So, without a diagnosis, my husband and I are treating the symptoms as best we can. I was on Lipitor for a couple years, but went off it to see if it was causing some of the symptoms in the beginning. Primary doc wants to put me back on, but I am hesitant. The posts that I have read here are supporting my hesitancy, in that it may compound some of the symptoms. I am still on the inhaler for asthma, but think I should go off, because I don’t think it is asthma. Anyone have any thoughts?
I am thinking massage therapy for the aches after the cramps and chiropractic to put my spine and hips back in place after the Frankenstein walk. Is it worth it to continue to try to use my NordicTrack ? (I do it slowly and alternate between moving my feet and arms, not both at the same time anymore.) My speech is pretty bad now, but until the diagnosis comes I can’t get into any programs to work on it. My husband is a trained singer and he has worked with me on breathing exercises, and that helps when I cry uncontrollably.
Since the symptoms are so similar to ALS symptoms, I am wondering what else we can to do manage them. Any ideas?
Thanks, and God bless all who are struggling with ALS and all of the caregivers.