2 Docs; 2 Opinions on Tingling/Numbness

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rhythman

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I know this has been discussed before, but the 2 neuros I've now seen were both so certain about their opinions, I want to know what your thoughts are based on your experience, discussions and reading.

The former neuro I saw (who became ill and is off work right now) and the one I saw today had completely different comments about numbness and tingling when they asked me to tell them recent symptoms. One thing I noted for them was that for all of November, I awoke every night with all 4 limbs 'asleep', and this has continued, but with only my right arm, until today. I also said that my feet have fallen 'asleep' often when standing in one place (ie: to shave) or after sitting. This feet falling asleep thing has also occured EVERY single time (without exception) that I've sat on the bathroom 'throne' for the past 6 months. I don't know what's so special about that 'seat', but it just happens at home and work...odd. (Sorry to be so graphic and stop laughing :)).

One neuro said that's likely not als because of those symptoms, even though I have several symptoms that he said "are often seen in als patients." The other neuro said that those symptoms do not "rule out the posssibility of als at all".

I thought I read on one post that Barry had symptoms like this before being diagnosed. What have you well read people found about the type of numbness and pins & needles episodes that I described?
 
I'm afraid to offer any opinions about tingling and numbness any more, because ALS is so screwy that I think anything is possible. But it is still my impression that it is unusual at onset. (However, I came across a neuro report on me from 2002 that I had forgotten about; I saw him for tingling and numbness on my right side. Have no idea if it's related to ALS bulbar "onset" in 2006.)

My guess about your feet falling asleep on those two seats and no other would be that there is something about the height that may be cutting off circulation in your legs.

Tempting though it is, I'll leave the smart-ass remarks to Glen. He does them so well. :lol:
 
My experience with numbness was in the ring finger and pinkie on my right hand. It occurred every morning for about the first five minutes after I woke up so I went to see my GP about it. He suggested a pinched nerve in my neck and told me to put a rolled up towel under my neck while I was sleeping. I did that and the problem went away. That was over 15 years ago and I have not had the problem since. So a pinched nerve not connected to my ALS.

As far as all four limbs being "asleep" and numbness after being on the throne, I have no advice except that it never has happened to me no matter how long I stayed in bed or on the pot.
 
Thanks for the replies.

It's weird; 2 experienced neuros and they were both so adament about their positions. I thought that after 25 years of practice as well as the journal readings, conferences, etc. that they would say something similar. One guy said "ALS is motor not sensory...period. There may be very, very rare cases where some numbness and tingling is involved, but not body wide and facial like you describe." The other guy said something like "There have been several cases of als patients who had months or years of tingling and numbness preceding their diagnosis. It's much more common than the people think. The numbness/tingling often leads neurologists away from als and delays diagnosis of als."

I left the office confused. I know that 'experts' in any field have different opinions-how to build a house, run a football offence, play guitar-but, I didn't expect such polar opinions by 2 veteran neurologists.
 
The nuros that i have seen said flat out no to sensory symptoms. I would think that one needs to be careful in linking early sensory symptoms to ALS down the road. Allot of people have sensory symptoms in their lives, even more so later on in life when ALS is more likely to occur. (The likelihood of a pinched nerve, or circulatory problems increase drastically over the age of 50.) So do these people with these sensory symptoms have an increased chance of developing ALS? Probably the same chance of developing it as anybody else. However, if they did develop ALS, would they blame the sensory symptoms on ALS? Most probably would....
 
Good point, Buddy ... I have gone by the book before, and said "no sensory symptoms" ... but then, they say "no vision problems" either, and that is contradicted by a lot of PALS, including myself.

But I'm sure the conventional wisdom is right 99.9999% of the time.
 
I just reread my original post and noticed an error...I read a post by GrampAl, not Barry, about numbness and tingling as I've experienced.

Sorry Barry...I'm getting my fellow Canucks mixed up. :)
 
In reference to what Buddy said, please note that the age range where ALS is most likely to start is also the age range where most of us are being more closely examined for other age-related medical problems by our doctors. Many commonly prescribed medicines for conditions such as high blood pressure or high cholesterol may have side effects that mimic neurological problems. Other common medical conditions in that age range, such as type 2 diabetes, are capable of causing neurological complications all by themselves. All of these point to the necessity of getting your doctors involved earlier rather than later when you are experiencing neurological symptoms.

Believe it or not, it is possible for people to have more than one condition that has neurological effects. I think that is one thing we all lose sight of at one time or another. Doctors that are inexperienced in dealing with ALS may also fail to see the connections properly and, therefore, may provide incomplete or incorrect advice. If a patient has multiple chronic conditions, it may be extremely difficult to sort out which symptom is being caused by what condition. I think that some of the delay in diagnosis for some patients is probably attributable to that type of difficulty in sorting things out.

I think we all need to be more careful about attributing all of our personal quirky symptoms to ALS. Obviously, the Googlers are reading the posts we make and some of them are grasping at our asides to convince themselves that their oddball symptoms point to ALS, as evidenced by this thread. We'd all be better off sticking to the conventional wisdom, in my opinion, if for no other reason than to start choking off some of the Google-fueled speculations that are being fed back from here into Google and creating an endless positive feedback loop.

My two cents, USD.
 
"Sorry Barry...I'm getting my fellow Canucks mixed up".

Getting an Albertan mixed up with someone from Toronto? That is horrible!
 
Sorry Barry. Toronto's a place? I'm from the East coast and I thought 'Toronto' was just an airport I passed through on my way 'out West'. :)
 
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I think we all need to be more careful about attributing all of our personal quirky symptoms to ALS. Obviously, the Googlers are reading the posts we make and some of them are grasping at our asides to convince themselves that their oddball symptoms point to ALS, as evidenced by this thread. We'd all be better off sticking to the conventional wisdom, in my opinion, if for no other reason than to start choking off some of the Google-fueled speculations that are being fed back from here into Google and creating an endless positive feedback loop.

A perfect example of what I was talking about concerning Google-cached speculation -- an old thread revived yesterday.

tetanus shot and als?

Dr. Google has a long memory. Unfortunately, he's not so good at sorting the accurate information from the speculation from the utterly false or disinformation. Since he won't do it, we ought to try to do it.

Another two cents, USD.
 
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