Need your widsom

[hopingforcure]

Hello Hardy,
It sounds like the way the muscles atrophied were not als classic at all.
I agree on some kind of viral thing, and I think the next emg will clarify that you do not have als. I was talking to someone I know who is a pain management specialist, they also said that sometimes strange viruses will act like what you describe, and sometimes they will go undiagnosed. and will just be one of those unkown things. I really do not think ALS is in your future, unless of course it becomes your cause. I often hope that the people who come on the board, and then find out they have something else, or even better symptoms leave, become big voices for ALS. Sounds corny but I often think of all the people that this board has helped through tough tough times, and how many tall tall trees AL and Cindy have talked people out of, and think these people will find the answers to als, with them is a voice...

 

[hardy42]

Thank you once again, hoping

So is it more the number of muscles all atrophying at the same time? That is really the only remaining question I have.

As to your comments about leaving the site: I feel that we are almost obligated to call more attention to this disease.

 

[wright]

Hello again Hardy

I have tried to gather information on the number of muscles that are (typically) initially affected with ALS, but I am having a hard time. It seems to me, though, that it would be incredibly coincidental (and unlikely) for so many different motor neurons in the spinal cord to go "bad" all at once and cause so much atrophy and weakness in so many different muscles. I am continuing to research it and hope to have something more definitive for you . . . and for myself . . . and for this forum.

Does anyone else know of any studies or reviews that address those issues?
Of course, experience goes a long way too: so how many muscles are usually affected, initially with ALS . . . and what would a typical rate of progression (again, initally) for atrophy be?

 

[Lorie]

Affected Muscles

Taken from Ride for Life and ALSA Website's:

ALS is a disease of the motor neurons in the spinal cord and lower brain which control the voluntary muscles throughout the body. ALS is also known as Lou Gehrig's Disease or motor neuron disease (MND). When these motor neurons die as a result of ALS, the ability of the brain to control muscle movement is lost. The groups of muscles affected and the order in which they are affected varies from one person to another. For some people with ALS, symptoms begin with the muscles for swallowing and the tongue. For many, muscles in the hands, wrists, shoulders and ankles tend to weaken first.

ALS is a fatal neuromuscular disease. It attacks the motor neurons responsible for transmitting electrical impulses from the brain to the voluntary muscles throughout the body.

When these muscles fail to receive messages, they eventually lose strength, atrophy and die.

Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.

The hands and feet may be affected first, causing difficulty in lifting, walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.

As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilatory support in order to survive.

 

[wright]

Thanks for the info, Lorie

Would you know of actual scientific studies (as opposed to a general article) that indicate the average progression of muscle atrophy and the number of muscles affected, initially. I know that it varies, but there has to be a general trend.
When your article said "muscles of the hands" or "muscles of the ankles" etc., i it one muscle that is affected first and then other muscles are affected in succession? . . . or . . . are they all affected at the exact same time? Same goes for atrophy: all of these articles talk about atrophy, but they never indicate the progression. There have to be actual scientific journal articles/studeis that give the "general / average" trend for this disease.
Again, I realize it is highly variable, but I think that is what Hardy42 is looking for (as well as myself . . . and I'm sure others on here): he had a lot of his muscles weaken and atrophy (and atrophy quickly) at the same time (as did I). Is that indicative of ALS . . . or some type of peripheral neuropathy.

 

[olly]

wright

i have searched the internet and there i have found no studies/progression of atrophy starting in a single muscle and progressing only of one limb to another.i have however found atrophy can be thinning of a limb or general wieght loss.
i dont have any focal atrophy of a limb but i do have thinning, this is more noticable in my arms, they are thinning away from my elbow/shoulder joints. i have had a tremendous wieght loss over the last 4mths, about 11/2 stone so i dont know if this is the cause or not.
i would suspect atrophy may begin in one muscle but by the time the atrophy is noticable it has spread to others of the same limb,if that makes any sence lol.

 

[wright]

i would suspect atrophy may begin in one muscle but by the time the atrophy is noticable it has spread to others of the same limb, if that makes any sense


That does make sense, Olly . . . but in my case, I noticed atrophy in multiple muscles, all at the exact same time . . . and it appears as if Hardy42 did too. I also atrophied very, very quickly (in a matter of a month or so) and it then simply stopped; I have had no additional atophy for about two months.

I must also add that I have not been diagnosed with ALS . . . I have been diagnosed with some type of mononeuropathy multiplex (this is with 99.9% certainty according to the neuros that I have seen). It's that remaining 0.1% that reaks havoc with my mind from time to time. Further reassurance is what I need every so often . . . and it looks like Hardy42 (and probably many others on here) need it too.

 

[olly]

wright...... i totally understand, i have umn symptoms signs but possibly lmn as i have loss of muscle tone/contraction in my left leg, but still no definate diagnosed, my neuro said to my doc in a letter he does not know which box to put me in. ive been told the umberella is so wide in neurological deseases and they still dont know that much that a definate diagnosed is sometimes hard to reach. there could be a whole new deseases/boxs to fit people into when imaging/mri improves. it too drives me mad not knowing a 100% what is wrong, i think your probably like me, i like to know everything in detail inside and out lol.
take care
caroline

 

[Lorie]

Wright

I will see what I can find. I have three years worth of info. on my home computer I cannot access right now because I have 9 viruses on it. My husband is working to salvage it. I am using a Laptop, working from the bare bones. Hang in there and lets see waht we can do. I have a scientist contact at the University of Pittsburgh. Maybe he can help us out. If I can find his E-Mail address. I can't even access those.


Lorie