6.7% Twitching Not ***

[zEarthyRanger]

Good points but it is NOT true that 6.7 per cent will have ***.

Even if 6.7 per cent of *** starts with twitching it doesn't mean 6.7 per cent of twitching is ***.

90 per cent of lung cancer probably starts with coughing but it doesn't mean 90 per cent of coughing is lung cancer.

 

[GinniferLynne]

MarksmanS.

I was at Borders yesterday, and once again, went back to the medical section and pulled out Victors and Adams Principles of Neurology 2005. I had a chance to read the whole section on ALS (while my husband was occupied with another book, or he would get upset

Anyway a few quotes I'm going to write again "Fasciculations are almost NEVER the sole presenting symptom in ALS - this is a clinical truisim with which one can reassure many panicked med students and physicians who are concerned about persistant fasciculations"

"weakness usually begins in the hand or forearm and not long after a triad of weakness, wasting/fasciculations and generalized hyperreflexia develop"

***NOTE: I have generalized brisk reflexes - I know other do as well. As my neuro said, there is a difference between pathologic hyperreflexia and non-pathologic.

Remember that weakness is the hallmark sign of the disease 99.9% of the time.

One last quote from CCF docs "fasciculations without weakness or atrophy, especially over time, is highly unlikely to be ALS"

Hope this helps a little

Ginny

 

[JDrJekyllandMr]

Coughing spells are most likely due to pooling of sliva in the mouth (since the swallowing action is compromised) and it goes down the wrong tube.

 

[ydav3yat3s]

Mark,

Good post.

I also think the 6.7% study is misunderstood and not used correctly in this case. There was another study I remember also measuring twitching as the first symptom that pegged it at 3% too, but I don't remember where I read it.

 

[MarksmanS]

It's true about the 6.7% deal. It is not true that that % of us is ill with this disease. A good point.

I just am trying maybe to convince myself or somehow see that those of us measuring calves and the like are perhaps really wasting time. I guess there is some comfort in knowing dimensions are not changing and so but I think Basso has it right with the attitude of keep living each moment.

I hate to find comfort in this tragic story but it shows that als is not a silent killer. It does creep up on you but I think by the time you are twitching your symptoms would be serious. And the presenting symptoms are incredibly serious - this man was not like kind of listening for slurred speech - people thought he was drunk.

Anyway, let's try hard to stay in the Basso groove...

Mark

ps - i'll probably be testing strength by the end of the day but maybe not...

 

[bluenettle]

Thanks Mark!

It's amazing how we are all compelled to read & know as much as we can about ALS. Every time I have a follow up appt. with my neuro I read every ALS booklet in the waiting room. My husband told me once, he didn't think I was going to be happy until they told me I had it! How crazy is that. One thing I read that was some what comforting are the stats, I live in Kentucky and there are only 250-300 people in the whole state with ALS. It is such a rare disease.

Ginny, I loved your post! I too have (hid out) doing research at Books-A-Million, while my husband hung out in the magazine section!

While the story of the caddy is heart-wrenching and terrible, it does remind us that our twitching is not how this horrible disease usually presents! His symptoms were sudden & remarkable.

I also read a story in People magazine about an ALS specialist in California who got ALS, his first symptom was weakness. He thought at first it was due to a back problem. I don't remember all the specs of his story, but like Mark said, it didn't creep up on him. Once it started, it didn't let up.