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cturk

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After lurking around here for a few months and trying to learn more about this disease and my own symptoms, I have never seen so much conflicting information on a single website/forum.

I have read the symptoms and progression of hundreds of people with ALS (including most members with thousands of posts) instead of posting my own symptoms and falling victim to the "do i have ALS" community.

I would like to point out:

1. Noticeable atrophy CAN occur before clinical weakness. The visibility depends on the person's body weight/fat and the area of atrophy. It can also become symmetrical past the first stage and not simply confined to one side of the body although it USUALLY does start in one leg or arm. So it does not mean your right leg will be non-functional before you might notice atrophy or weakness in one or BOTH arms. Many DIAGNOSED members have had extensive atrophy without even a foot/wrist drop. So, NO. Atrophy does not occur only after your arms been paralyzed completely for years. ALS presents both nerve damage atrophy (1st and early) and DISUSE atrophy which is self-explanatory.

2. Weakness can and will present prior to complete loss of function. Yes, it is much easier to simply categorize it under clinical weakness aka "i literally can't open water bottles" but as many members are aware, there are many warning signs that this stage is in fact approaching but only realize this when thinking back to the beginning of their problems. Tremors, muscle burning, and loss of coordination are some of these symptoms. ALL of these symptoms can also be due to stress. Get the point?

3. Fasciculations...the topic of most controversy and the reason why many come to these forums. Unfortunately, there is no straight answer (I can feel the anger building in some of the long time members). I have read stories of DIAGNOSED members with 24/7 fasciculations with the classic worm like visuals and others with sporadic/unnoticeable/widespread twitching. And yes, both can be symptoms of ALS. Once again, feel free to ask around but you will most likely be forwarded to the BFS forums. What does this mean? Again..it means call your doctor.

I realize this may be counterproductive as it widens the gap between actual ALS symtpoms and other stress/health related issues but seeing posts such as; "Your fingers work? No ALS" "Twitch everywhere? No ALS" "No Foot drop? No ALS" "No cramping? No ALS" are not helpful. NONE of these statements are 100% true. This may be scary for someone already confused by their symptoms but if you're here and worried, you might as well be REALISTIC about the situation.

My point is, if you think you have symptoms of ALS and it is understandably driving you crazy, do not pester people who are not medical professionals and have no idea of your background/health history. GO SEEK MEDICAL ATTENTION. I know we all want to hear " you're fine it's not ALS" and if that is in fact all you want out of this place, go ahead and ask. It is a disease with incredible amounts of variability and fortunately nobody here will diagnose you with possibly the most dreadful disease known to man.

Think about your own medical history, progression, and make accurate decisions based on research. There are hundreds of members with their symptoms outlined in literally thousands of posts. Click their username, navigate to their post history and start READING. Otherwise, you will undoubtedly be told to see a doctor or take anxiety medicine.
 

Clearwater AL

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As you wrote,

("After lurking around here for a few months and trying to learn more about this disease and my own symptoms, I have never seen so much conflicting information on a single website/forum.")

So... why are you here?

PS. Your bio says you are interested in learning about ALS/MND... your summation appears to be the first paragraph. Should have been last.
 

Nuts

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I must admit that I had to read this post several times before deciding how to feel about it. After some consideration, I'm not sure why you feel long time members will be angry--we always try to stress that no two people present alike and that anyone with concerns should see a qualified physician. The only point that I would disagree with is your assumption that most people who come here with symptoms want to hear that they do not have ALS. To the contrary, I get frusrated by people who say they don't trust the doctors who told them they don't have ALS, and then keep posting more and more symptoms in an apparent effort to convince us that the doc was wrong. Most people who describe a combination of symptoms that sound supiciously like ALS are advised to seek medical attention. People who have symptoms that don't sound like ALS are advised to seek medical attention. It is generally people who (admittedly) consult Dr. Google and then convince themselves that they have every new symptom they read about, and who come to us over and over again, who "fall victim" to the DIHALS community. Thank you for the advise you offer--I personally wish that more people would take it.
 

Nuts

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My response has been sent for moderation. That's happened to me a number of times recently...am I on the bad list?
 

affected

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It was probably full of misinformation nuts ... bwahahahahaha

My reply appeared then disappeared, must be misinformation gremlins ...
 

Nikki J

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I agree people should be calling their doctors. We tell people all the time. Go to the doctor and BELIEVE your doctor.
Many diagnosed members have had extensive atrophy without even a foot drop/ wrist drop. ( by implication you mean clinical weakness)?case citations please?
You obviously have not experienced ALS weakness. It is really hard to convey. When the muscle is affected it stops working all of a sudden. Think of it as the muscle gets a telephone call to work. One day the call does not go through and it does not work. If it is a small muscle other muscles around it take up much of the slack which may indeed cause an experience of clumsiness etc but if someone is worried about a bigger muscle there is no question. One day I could not do a calf raise. My mind was trying but there was no sensation of strain and my heel refused to leave the floor. Bizarre but that is how it goes.
When ALS spreads certainly people can twitch all over. And people with the rare sod1 mutation can,I am told by my neurologist, twitch before weakness for some time. But once the doctor has cleared someone they need to move on

Good luck in finding the answers you seek
 

Nuts

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Oh, one final thought. It's not only people who think they have ALS but don't who are advised to seek antianxiety medication. PALS and CALS get that advise all the time. We're actually a rather equal opportunity group of people here. Why? People who are healthy, mentally and physically, don't hang out on ALS forums unless they are caring for someone who does.
 

cturk

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As you wrote,

("After lurking around here for a few months and trying to learn more about this disease and my own symptoms, I have never seen so much conflicting information on a single website/forum.")

So... why are you here?

PS. Your bio says you are interested in learning about ALS/MND... your summation appears to be the first paragraph. Should have been last.
I am also in the middle of being diagnosed. I truly respect the information given out by the long term members.

Still, I will still stick by my words that there is a ton of misinformation, or information that is being interpreted in the wrong way. I was able to learn about all of my symptoms and related info simply by doing what i suggested; reading thru the posts of helpful members like yourself.

But if people posting a list of symptoms then expecting members to diagnose them is the norm, than that is fine by me :)
 

Clearwater AL

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Cturk,

I have read and re-read your post and I find it amazing, my opinion.

As you wrote,

("I have read the symptoms and progression of hundreds of people with ALS (including most members with thousands of posts) instead of posting my own symptoms and falling victim to the "Do I have ALS" community.")

Falling victim? You say nothing about yourself or your symptoms but you feel compelled to lecture after your extensive reading of this Forum.

(It must have been rather time consuming to read the symptoms and progression of hundreds of people with ALS and members with thousands of posts.)

What are your symptoms?

How long have you had your symptoms?

Have you been to a Neurologist?

Have you had an EMG and NCS series?

Tell us about yourself and give some gravity to your nine paragraph dissertation, of your opinion, to the flaws of this Forum and or those whose post here.
 

cturk

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If you would like. Not sure why reading thousands of posts would be hard to understand, as that has been helpful to me in keeping my anxiety down.

-I have a weakening right leg that is thinner than my left. Visible atrophy and a strange feeling of quick loss of balance. No drop foot as of yet.
-It has moved to the right arm and chest with my right forearm thinning near elbow and visible atrophy around hands and tendons of wrist.
-Tremors when squeezing (even lightly) and leg muscles become exhausted. cannot straighten pinky.
-Right side of face will shake when pulling mouth to side or grimacing. Lip quiver on same side.
-Fasciculations in specific spots with random ones all around.
-Emotional liability
-Leg will jump away even when slightly grazed by finger
-Robotic movement of limbs
-Dry cough/yawning/clonus/positive babinski sign
-bloodwork with increased CK
-clenched fists in the morning, night sweats and yawning (CO2 build up? probably) restless legs

I have a very thing build with barely any body fat and am able to track atrophy easier than most. Progression seems to be going towards the clinical weakness stage.


I have 2 EMGs coming up in the next 2 weeks.

And Since you're taking it personally let me explain. Most of it was aimed at new people. Since I am relatively new, maybe I should have kept it short. I was just baffled by the black and white answers some people are getting around here like "if you can open a bottle its not ALS!" REALLY?

The only reason I posted this was after seeing conflicting opinions about the variability of the disease and to share my way of analyzing my symptoms. I believe everyone has the right to post what they think might be helpful.
 

cturk

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Also noticing cramping when suddenly extending or flexing muscles. At this point, I would love to be told I do not have ALS and never look back.
 

Nikki J

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Please let us know the outcome of the EMGs
 

cturk

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will do! Going back to what you said about large muscles...is it possible that I could have atrophy/softness especially now in the the quadricep area without clinical weakness?
 

affected

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I'm interested to know why you have two EMGs scheduled within two weeks?

Read the sticky again about perceived v clinical weakness ...
 

cturk

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I did not want to wait a month since that was the average wait at the clinic I was referred to ...(pretty hard to go about my life with this looming over my head) and was able to schedule one within the next week at BI Neurology.
 
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