Need your widsom

[hardy42]

Hello everyone. I have been on here for some time and just joined today with a few questions. I hope someone can relieve my fears.

I'm a 42 year old male. In very good health. About 3 months ago I had some weakness in my right arm (no pain, just some mild weakness).
This concerned me so I went to my GP and he ordered blood work (all clean) and an MRI (that was fine too).
He sent me to a neurologist (this was two weeks later) and he did an EMG on just my right arm (it was clean). He thought it was some nerve damage from a virus or something and told me that I was going to be fine.
Shortly after that I noticed my muscles shrinking in my arm (again, I had no pain). I measured them as this was happening. I have a friend who is a neurologist in another town, so I called him and went to see him after this happened. He pointed out that my shoulder muscle was smaller (deltoid is what he called it), my bicep muscle and another one in my forearm that I can't spell (brackioradius or something like that). All I knew was that my arm was shrinking and shrinking fast. I lost nearly 3/4 inch off my upper arm, about 3/4 inch off of my forearm and I have no idea how much I lost off of my deltoid (I don't know how to measure it). They just melted away in front of my eyes. This all happened in about six weeks.
He wanted to wait another month or so to do an EMG (so about 2 months after I noticed the shrinking muscles). This EMG was in 3 of my limbs (right arm, left arm and right leg) and took about 2 hours. All he found was acute denervation in my right deltoid. He said this was good news for a few reasons.

One: the muscle shrinking happened too fast and in too many muscles at the same time to be ALS.
Two: there would have been chronic denveration and acute denervation in a shrinking muscle if it was ALS.
Three: nothing has changed in the last two months. The muscles shrank and then stopped shrinking.
Four: all of my reflexes are normal.

He thinks that it was some virus or autoimmune problem that ate my nerves and caused my muscles to shrink and sometimes they only eat motor nerves.

What my fear is, is that he wants to do another EMG in a few months just to make sure there are no other problems. That is what concerns me. If he is so sure it isn't ALS, why would he want to do another EMG? He is my friend and I'm thinking he doesn't want to worry me.

I know there are a lot of smart people on here. Is what he told me consistent in what everyone has heard. Did the shrinking happen too fast and in too muscles to be ALS? And is the only way you are going to get muscle shrinking with ALS, through chronic and acute denervation?

Thank you everyone for taking the time to help me.

[hardy42]

Doesn't anyone have any insight into my questions? . . . ZenArcher . . . Wright . . . Hopingforcure . . . Al . . . anyone? :confused:

[hopingforcure]

HI sorry I took so long to resond.
First welcome to the board, I really see some favorable info from your post. The emg did not point to als, and your reflexes, point far away from als. Do not worry that you a repeat emg may happen, that is just to make sure things remain intact.
Weakness and atrophy would be more worriesome. You cant believe all the things that could cause your symptoms, a page full. Ask any questions, we are here for you..Hoping

[Al]

Hi Hardy. I'd have to agree with your friend. Atrophy was way too fast for ALS. I think he's just playing it safe with another EMG. Your weakness doesn't sound typical either. I'd bet on a virus too.
AL.

[hardy42]

Thank you so much for responding, Hopingforcure and Al.

Hopingforcure: you said that atrophy and weakness would be worrisome . . . I have weakness and atrophy. That is exactly what is worrying me. I know that Al said the atrophy happened too fast, but I also keep reading that ALS progresses so rapidly. What is meant by "progresses rapidly" when that is stated?
And about my EMG: by the time you have atrophy with ALS, would chronic denervation had to have taken place for that to happen?
One last thing: does the fact that my deltoid, bicep and brachioradius muscles all atrophied at the same time and at the same rate, also point away from ALS? Is that just too many muscles at once?
Thanks again.

[puzzled36]

You need to look up Monomelic Amyotrophy. It happens in males, affects one limb, usually arm, happens quickly and generally doesnt spread anywhere. It is a form of motor neuron disease but isnt fatal and generally isnt disabling. Best of luck. Gina

[wright]

Hey Hardy42

Sorry I didn't respond to you earlier . . . although hopingforcure and Al are pretty smart people, so you were in good hands.

It doesn't sound like monomelic amyotrophy, because that actually happens slowly. You sound like you got hit hard and fast, as if a peripheral nerve was damaged, eaten, etc. Your story actually sounds a bit like mine. I lost quite a bit of muscle quickly like yourself. You might have something called Parsonage-Turner syndrome . . . aka . . . neuralgic amyotrophy . . . aka . . . brachial neuritis. If you google it, it will tell you that it always starts with excruciating pain, but there was a study done at John's Hopkins recently that indicated that nearly half of the cases are painless. They don't exactly know what causes it (maybe a virus . . . maybe autoimmune), but it "eats" your peripheral nerves and causes weakness and atrophy (atrophy can happen very fast). It is not fatal and all you have to do is wait to get better. There is no treatment for it. That would be my guess over the internet.

As far as why it's not ALS:
Happened too quickly (unless you were unaware of your body prior to noticing weakness and atrophy).
Happened in too many muscles at one time. ALS typically affects one muscle and then marches to the next one.
Clean EMG with muscle atrophy doesn't fit with ALS.

Hopingforcure and Al: do you agree on those 3 points?

[hopingforcure]

I agee with you Wright, your points were completely on target. The atrophy and weakness were just not als acting. I know this is probably a scary time, but it sure seems like we are in agreement that this sounds like something else. I think for sure the things you and Gina mentioned have to be looked into further.
Sounds almost viral. Hoping

[hopingforcure]

Oh and yes the emg would have shown a change, the muscles that were intact would have been working extra hard to create amptitude, as well as the health of the muscle and nerves alike.

[hardy42]

Thanks again for all of your replies

I have another question.

I've seen a post by ZenArcher, Al, Wright, Hopingforcure that addressed muscle atrophy and ALS: 1/2 inch loss of muscle in a month, or 3/4 inch loss of muscle in 6 weeks (me) or 1 inch loss of muscle in 2 months is just too fast to be ALS. Where did everyone read that or do you simply know from experience?

[Al]

Mostly experience. Talking to people here and support group and 4 years of ALS Clinic for me.
AL.

[hopingforcure]

Reseraching, others, and a bunc of questions and study. That does not sound like als atrophy, to me at least.. hoping

[hardy42]

I can't thank you all enough for your time. You all inspire me.

Last questions and then I will relax.

What would be a normal amount of atrophy when it comes to ALS?

Does the fact that so many of my muscles . . . that is . . . deltoid . . . bicep . . . brachioradialis (I found out how to spell it) . . . all atrophied at the exact same time, also point away from ALS?

Does weakness happen before atrophy . . . and if so . . . how long after weakness does atrophy happen.

Thank you once again.

[MtPockets]

Hi Hardy,
I just wanted to add my own opinion here to give you more input. I agree with AL and the others about this probably being some type of auto immune or viral thing.
ALS manifests itself in different ways in different people, but generally follows a pattern that is not like what you are describing.

I think your friend wants a follow up EMG to verify that it has stopped spreading. It takes times for this to show up and be verified. Also if a later EMG shows changes it may point them in another direction of what to consider, depending on the change. I would not be afraid of ALS at this point. It just does not fit your symptoms.

[hardy42]

Thanks again everyone

You have all calmed me immensely. I think I will be completely calm once I get that next EMG and it doesn't show anything.

So to calm myself a little more:

Did too many of my muscles atrophy at the exact same time to be ALS (again: deltoid, bicep, brachioradialis)?

[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 undx. 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]

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]

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 dx, 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 dx 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]

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