Possible Bulbar ALS?

[cubbies]

Thank you very much for your response Wendy-I really appreciate it and I'm so sorry for what you're going through.

I guess what I'm looking for is anyone who has ever heard of ALS presenting this way-not with slurred speech, but with "slightly weak throat muscles." It seems as though it's a possibility, but I keep trying to tell myself that I'm 33 and I'm too young for something like this to happen, especially with a presentation this strange. It's just that there hasn't been a doctor (family, neurologist, ENT, speech pathologist, etc) who can tell me WHAT this is as it slightly gets worse. Going through this process is definitely nerve wracking and I'm just hoping for the best although I continue to get slightly worse day by day.

Thanks again everyone for all of your well wishes and support.

 

[cubbies]

Good morning,

I have 1 week until I see the neurologist and 9 days until my video stroboscopy (where the look at they larynx/vocal cords with a strobe light) and things are slowly getting worse. My tongue has a crampy feeling extremely frequently. My left calf is crampy/sore every step I take. My right hand on the right side cramps up after some use. The top of my right pinky has a clear indentation that hasn't been there before. My throat symptoms are slowly getting worse by the day (muscles straining to talk, gets tiring to talk even after a few seconds). These tongue issues really have me worried-is tongue cramping a bad sign? That's the best way I can describe the pain is either dull/cramping, and it doesn't have to be after I use it either. I can just be sitting and it cramps. Again, I realize I just may be panicking, but these symptoms keep getting extremely slowly worse by the day. My Creatinine levels were 0.7, so those were OK. Thank you everyone for reading-any help would be greatly appreciated.

 

[codyclan]

Cubbies,
You need to wait till your appointment. Still don't see ALS in your symptoms. My husband died of Bulbar Onset ALS. He did not have tongue 'cramping'-ever. His tongue just stopped working. No cramping, no pain, just no response. Same with throat and swallowing. Really, please don't post until after your appointment. You do need to talk to your doc about dealing with your anxiety, at least until after your appointment, that seems to be having a significant impact on your quality of life.

 

[diagnosed2016]

Here is my take- you have no idea how the voice actually works and what the physiological actions are and muscles involved. None of what you've described is als. You should see a speech therapist. It sounds to me like you've developed some bad vocal habits to overcompensate for something or to correct a problem that you believe you have and it's causing vocal strain.

 

[cubbies]

Good evening,

I had my video laryngoscopy done, but won't get the results for weeks-I asked the ENT doctor "did you see any muscle weakness or anything strange," all he would say is "no growths or tumors." Also, at my last neurologist appointment 2 weeks ago, he did not even touch me-he simply discussed things with me and said "don't worry about ALS, but never say never."

Unfortunately, my throat is still slowly getting worse. Sometimes when I say "ball, call, tall, etc" the "L" sound doesn't come out at all. Also, starting last night, my left arm felt dead. I'm right handed, but the biceps muscle is not right at all in my left arm-I definitely can't do what I'm used to doing with it. My left arm gets tired just holding food, and it's only after a few minutes. When I put my left arm over my head, it takes far more effort. I did a pushup and I can feel the muscle that isn't right vs the right arm. I visit the neurologist again on Tuesday, but you all have been absolutely fantastic throughout my ordeal. This new symptom is really scaring me again, and I've been put on 2 medications to help with my anxiety. Any opinions from all of the courageous folks out there would be greatly appreciated. I'm definitely scared come Tuesday. Thanks everyone!