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rhythman · 12-01-2009, 04:19 PM

Thanks for the lengthy replies. I've been offline for awhile because I am trying to stay away from the internet more.

I've been careful to tell doctors exactly what I've been experiencing and not what I've read or think that they want to hear. I told the neuro and ent about past episodes, but this is different. I'm not doing the Dr. Google thing anymore, but I do get some comfort coming here periodically; I'm not sure why. I know, as trfogey suggests, that I should just let the doctors do their thing, but sometimes the time between appointments and tests is tough and I just need a place to ask questions/vent. I feel that there is so much experience and knowledge here, people can relate to what I'm feeling and comment on some of the symptoms/issues.

Today, I saw a very good ent and he was really concerned about the tongue faciculations. I told him that I had had some neurological issues before (left side only) but he just shrugged and said "I have to deal with what I see now". He said tongue faciculations ALWAYS mean neurological problems, usually als, and I should get back to the neuro asap.

After this, I told him that I have pain in my feet (bottom) all the time, I wake up most nights with all 4 limbs asleep and my feet fall asleep while sitting, driving, etc. I asked if this could point away from als and he said "I doubt it, but I'm not a neurologist."

I know Al and a few others have said they had tingling, especially at night, but I still am hoping this points away from als. Despite this 'scary' appointment with the ent, I'm still hoping for a clean emg and ncv soon.

12-01-2009, 04:19 PM	#6 (permalink)
rhythman New Member (Say Hi) Registered Member Join Date: 2009 City: xxxxxxxx State: New Brunswick Country: CA Diagnosed: 00/0000 Posts: 85	Re: First Tests Okay, But Worsening Symptoms Thanks for the lengthy replies. I've been offline for awhile because I am trying to stay away from the internet more. I've been careful to tell doctors exactly what I've been experiencing and not what I've read or think that they want to hear. I told the neuro and ent about past episodes, but this is different. I'm not doing the Dr. Google thing anymore, but I do get some comfort coming here periodically; I'm not sure why. I know, as trfogey suggests, that I should just let the doctors do their thing, but sometimes the time between appointments and tests is tough and I just need a place to ask questions/vent. I feel that there is so much experience and knowledge here, people can relate to what I'm feeling and comment on some of the symptoms/issues. Today, I saw a very good ent and he was really concerned about the tongue faciculations. I told him that I had had some neurological issues before (left side only) but he just shrugged and said "I have to deal with what I see now". He said tongue faciculations ALWAYS mean neurological problems, usually als, and I should get back to the neuro asap. After this, I told him that I have pain in my feet (bottom) all the time, I wake up most nights with all 4 limbs asleep and my feet fall asleep while sitting, driving, etc. I asked if this could point away from als and he said "I doubt it, but I'm not a neurologist." I know Al and a few others have said they had tingling, especially at night, but I still am hoping this points away from als. Despite this 'scary' appointment with the ent, I'm still hoping for a clean emg and ncv soon.