rhythman
Active member
- Joined
- Oct 22, 2009
- Messages
- 91
- Reason
- Learn about ALS
- Country
- CA
- State
- New Brunswick
- City
- xxxxxxxx
I've stayed off the computer, away from Dr. Google (thanks trfogey) and these boards, but I find this a good source of information and I can 'talk' here where people can relate, not just 'listen'. I need to 'talk' today.
I had an appointment yesterday with a highly respected ENT and he basically said that the tongue fasiculations, voice issues and swallowing likely mean als. He said that in his 30 years experience, this is what he's found to be the case.
Before the exam, he asked about any neurological history, both recent and more historical. Here's what I told him:
-(Historically) Several instances of left side clumsiness, stumbling, muscle spasms, muscle pain, 'chills', cramps, etc. over a 30 year period. The last 'bad' episode in 2001 also came with the added symtoms of tongue pulling to 1 side and enhanced gag reflex. Nothing ever found and diagnosed by 2 neuros as possible migraine or possible MS.
-(This time) Late August to end September: Chewing problems and handwriting issues...that's all I noticed. October to now (Dec.2nd): Same symptoms, plus twitching started and spread, tongue facics (he noticed this), clumsiness all limbs, rapid decline in strength in all limbs, nasal voice, excess saliva, excessive yawning, lots of tingling/numbness in limbs and face, wake up every night with all limbs tingling/asleep, and the palms of my hands and bottoms of my feet feel bruised. Previously, my left side was only involved, so I can not say that this is the same at all, but I've felt several of the same sensations in the past.
I asked if my history or anything else (rapid decline-8 weeks-of strength in all limbs, lots of pain, lots of tingling/numbness) might give me hope it's not als and he said something like:
"This doesn't seem like what you had previously and als patients can experience rapid decline in all limbs, as well as lots of pain, tingling and numbness. It's a myth that there are no sensory issues with als. I'm not a neurologist, but based on what I've seen today and what you told me about the past 3 months, I'm strongly leaning towards an als diagnosis. Sorry. Take care. Bye now."
I've always been a strong guy...mentally and physically...but I cried all the way home thinking about how to tell my wife and teenaged daughter. I just didn't expect an ENT to be so positive and to give a diagnosis...it really caught me off guard.
What do you 'guys' think?
I had an appointment yesterday with a highly respected ENT and he basically said that the tongue fasiculations, voice issues and swallowing likely mean als. He said that in his 30 years experience, this is what he's found to be the case.
Before the exam, he asked about any neurological history, both recent and more historical. Here's what I told him:
-(Historically) Several instances of left side clumsiness, stumbling, muscle spasms, muscle pain, 'chills', cramps, etc. over a 30 year period. The last 'bad' episode in 2001 also came with the added symtoms of tongue pulling to 1 side and enhanced gag reflex. Nothing ever found and diagnosed by 2 neuros as possible migraine or possible MS.
-(This time) Late August to end September: Chewing problems and handwriting issues...that's all I noticed. October to now (Dec.2nd): Same symptoms, plus twitching started and spread, tongue facics (he noticed this), clumsiness all limbs, rapid decline in strength in all limbs, nasal voice, excess saliva, excessive yawning, lots of tingling/numbness in limbs and face, wake up every night with all limbs tingling/asleep, and the palms of my hands and bottoms of my feet feel bruised. Previously, my left side was only involved, so I can not say that this is the same at all, but I've felt several of the same sensations in the past.
I asked if my history or anything else (rapid decline-8 weeks-of strength in all limbs, lots of pain, lots of tingling/numbness) might give me hope it's not als and he said something like:
"This doesn't seem like what you had previously and als patients can experience rapid decline in all limbs, as well as lots of pain, tingling and numbness. It's a myth that there are no sensory issues with als. I'm not a neurologist, but based on what I've seen today and what you told me about the past 3 months, I'm strongly leaning towards an als diagnosis. Sorry. Take care. Bye now."
I've always been a strong guy...mentally and physically...but I cried all the way home thinking about how to tell my wife and teenaged daughter. I just didn't expect an ENT to be so positive and to give a diagnosis...it really caught me off guard.
What do you 'guys' think?