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notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Welcome New Person,

You're here for one of several reasons. You're scared because some symptoms you've had popped up as ALS on Dr. G o 0 g 1 e. Or, perhaps you've already seen a doctor and that doctor has suspicions that have sent you looking for answers.


The Sticky Posts have great information on them if you've read them. I have some other suggested reading for you--read the Memorial forum. Read the gut-wrenching posts by those that have lost their loved one to this dreadful disease.

Remember when you ask questions that are nearly identical to the post below yours that the answer isn't likely to change for you, either.

If you have fears--your first stop is your general doctor. He/she will lead you from there. ALS strikes about 1 in every 100,000 people. It's RARE.

The PALS (people with ALS) that reply to the posts here do so in a variety of means.

Some use one or two fingers.

Others are replying with a device that uses their eyes only--one letter at a time. It can take someone up to an hour to reply to your post.

Some are using a trackball and on-screen keyboard and typing with their feet. Again--often one letter at a time.

Remember that when you post your questions.

We ARE here for support--the caregivers, those with ALS and others that have joined and support the community and are awaiting diagnosis. We have ALL been where you are. BUT--make it easy for us to HELP YOU.

Write your questions clearly. Don't use big blocks of text and abbreviations that you'd use on your cell phone. ALS normally strikes those over 40-50. Many in this age group aren't text literate. Use real words!

Remember, too, that all symptoms don't always mean just one thing is going on. Don't assume--let your doctor do their job.

ALS takes time to diagnose. It doesn't happen overnight--and while you may read stories of people being misdiagnosed--it's not the norm. BELIEVE what your doctor tells you.

So, you have questions.

I'm twitching all over. It all started with ....

While twitching is seen in ALS--it's not an early sign. It happens when the muscle is already dying--and with ALS--you'd have had some level of loss in ALS. Don't worry. Benign Fasciculation Syndrom isn't that uncommon. With no loss of ability, you don't need to panic.

I have pain/stiffness/numbness in....

You're in luck. ALS doesn't cause pain, stiffness and numbness. Those are sensory symptoms. ALS doesn't affect sensory nerves. NO ALS.

I think I have atrophy. I measured my arm/leg and....

First, stop measuring. It's normal to have limbs that aren't exactly the same size. Even if you do[/] have atrophy, it doesn't mean ALS.

My EMG/Neuro Exam was normal but....

There is no "but". With a normal EMG and normal neuro exam in light of the symptoms that sent you to the doctor to have it done to begin with means NO ALS. The EMG would have shown something before you even noticed it as the nerves in the beginning try to compensate and send out little shooter nerves to make muscles continue to work. This process DOES show on an EMG--even before you have symptoms. Again, I'm not saying something can't still be wrong with you--but it's unlikely ALS with normal test results.

I woke up with this with no warning and now I cant...

ALS is fast--but it doesn't cause loss overnight. Some things DO--see your doctor.

I was really sick a month ago and now...

Chances are good that you're dealing with something post-viral. There are a lot of possibilities. The fact that these new symptoms come after an illness actually point away from ALS.

I feel really weak when I ...

Please understand that stamina and weakness are two different things. In ALS--a person might notice that they can no longer turn a key in their car, or push the button on the deodorant can, or they fall when their foot drags the ground. AlS is insidiously progressive. Once lost, that part doesn't come back. It also doesn't 'come and go'. Once something is gone--it's gone for good. Poor stamina, while concerning for you, isn't ALS. See your GP.

If none of the above answer your question, including the stickies--by all means, post and someone here will do their best to answer you. But again, remember, your answers are coming from mostly people that have ALS.

To my knowledge, we don't have a doctor here--and even if there was one--you can't get a diagnosis here--just advice--which is generally going to be If you think something is wrong, please start with your doctor and go from there.

There are numerous diseases that mimic ALS. ALL of those need ruled out before a diagnosis of ALS is given. If you have no loss of ability anywhere--chances are very good that you also don't have ALS--which doesn't mean you can't still be ill--so, again, see your doctor and get a diagnosis.

Good luck to you!


Oh, and if you're wondering--I have no diagnosis. I don't know what's wrong with me--just some crazy things that led me here. Remember, it's NOT ALS until it can't be anything else (Thanks Zaphoon for that great line)
 
great post notme but i must correct you on one of the questions and reply.
if you have a relative amount of umn involvement you can have pain and stiffness in als.
also,these symptoms are not sensory but are caused by the motor neurons dying in the gey matter of the brain and spine.
dont mean to offend,just clarifying the facts.
 
great post notme but i must correct you on one of the questions and reply.
if you have a relative amount of umn involvement you can have pain and stiffness in als.
also,these symptoms are not sensory but are caused by the motor neurons dying in the gey matter of the brain and spine.
dont mean to offend,just clarifying the facts.

Never offended by you, Olly :)

Learned something new. I've always thought pain was a sensory issue. Maybe one of the mods can edit that answer to read "With a normal neurological exam, pain and stiffness aren't a symptom of ALS?"

I certainly wouldn't dispute that the spacity and cramps I get in my UMN areas (my legs) aren't very painful. Hence my love for Baclofen (when it works) I also have hyper-reflexia, positive Babinski--and--no diagnosis of ALS

Thanks, olly
 
i think were getting our wires crossed a bit lol.
yes,technically you could say pain was sensory but pain as a symptom is caused by many many things.
sensory symptoms are things like numbness,pins and needles,loss of position sense in arms or legs resulting from the pheripheral nervous system............even though sensory symptoms like these are not the norm for als some pals can get them.
in als there is both umn and lmn involvement...........lets say a pal had more lmn involvement than umn then they probably wont get spasticity resulting in pain or stiffness,were as a pal who has umn dominant als are going to have spasticity/pain and stiffness.
 
We're on the same page, Olly.

I'm just thinking that for the majority of those that post on this side of the forum aren't having the type of pain and stiffness you all with ALS get. I was thinking more of the 'joint' pain and 'creaking necks' and those kinds of pain/stiffness.

Your knowledge level far surpasses mine :) I was just hoping some of those that start on this page would see this and relax a tad :)
 
OK, just how does reading 'the gut wrenching posts' on the Memorial forum help someone who is scared to death - whether their fears are unfounded or not? Seems akin to yelling 'fire' in a crowded theatre and expecting the audience to take deep breaths and relax in their seats.
 
I'm only guessing, but I think it is to engender respect for the community active on this forum who have actually been diagnosed with one of the MND variants, and who selflessly give their time to help others. Some of those seeking help do appear to be towards the hypochondriac end of the spectrum, and maybe don't appreciate the help they get, or the cost to those giving it. That said, I haven't plucked up the courage to go the the Memorials yet myself...
 
OK, just how does reading 'the gut wrenching posts' on the Memorial forum help someone who is scared to death - whether their fears are unfounded or not? Seems akin to yelling 'fire' in a crowded theatre and expecting the audience to take deep breaths and relax in their seats.

My hope with that comment was that perhaps some would realize what the people with ALS and their caregivers go through each day and just maybe think twice when they get upset at either short replies, replies they consider mean--and to appreciate their health and the time it takes PALS to answer them--and just maybe allow them to let unfounded fears go when those living through it give them very good suggestions based on their experience.

My apologies if it offended you.
 
I am new here, and I thank you so much for this post. I have been struggling with progressively worsening symptoms for over a year now. I am in between referrals, my GP and 2 neurologists have all agreed there is an issue, but have to pinpoint a diagnosis.
I think the most infuriating thing I see is from new people is "My doctor says is is not ALS but....." I believe those are the people that need to read the memorials. As desperate as I am for a diagnosis and treatment..... ALS is NOT the disease I want to have. I am here because I believe in preparing for the worst, and hoping for the best.
 
NorthernDancer,

Janine and Kitchner actually nailed what I meant--I was trying to find a tactful way of saying it--and for all my supposed ability to write--words escaped me other than what I wrote at the time.
 
Notme,

Rest assured that I took no offence at all. I understand that you are trying to help.

My point is, and always has been, that those individuals (particularly those whose symptoms point away from ALS) are actually not capable of responding in a more reasonable way. Excessive worriers share the brain changes that those with OCD do.

I have read that three parts of the brain are involved with obsessions like these. The 'orbital frontal area fires the mistake feeling' sending a signal to the deepest part of the cortex. This area, the cingulate gyrus 'triggers the dreadful anxiety that something bad is going to happen.' Thus signals are sent to the heart and the gut 'causing the physical sensations' associated with dread. These 2 parts of the brain lock in the 'on position.'

The third part of the brain involved in this painful situation is the 'caudate' which sits deep in the center of the brain. This part should allow thoughts to flow to other thoughts except in those affected this part is unable to 'shift the gear.' In other words there is a faulty circuit.

Brain scans demonstrate the hyperactivity in these centers and show the very concrete nature of obsessive thoughts. Those affected may realise that their fears make no conceivable sense yet the torment continues.

Patients like these have been described as feeling as if they are on death row and awaiting execution. Telling them they are fine registers as just the briefest flash of relief before the cycle begins again. And that is why the posts continue. Reading the painful realities that the memorials list reinforces their fears mightily.

We have members who fit into this category and are aware of it and eventually seek treatment. It is a tough and painful road to recovery. Many don't fully recover. It is an illness. It some cases it is genetic. No one chooses it.

Why can't those who are most annoyed with repeated posts that make no sense just not respond? Responding in each and every instance to these posters has become an obsession in itself for some.

I have been criticised and called names ( 'old hen', loved that ) by respected members for objecting to the heavy handed treatment that inevitably follows when a person is 'stuck' and can't move on. Yes, I am hitting my head against a brick wall here.

So, Notme, please know that I appreciate your very helpful and respectful responses.
 
Oh--I'm one that's been accused of "feeding trolls" but I can't seem to help myself. I hate to see people wasting months of their lives with an obsession with ALS.

Eventually, I give up. But--I also know what it's like to feel all alone when your body is betraying you. So--I guess I'll keep trying to allay fears where I can--and hope people can move on.

Actually, replying to people here, for some strange reason, keeps my mind off my OWN health crap, weird as that sounds.
 
It is a very real relief to have someone respond to you when you are alone and frightened.

And, yes, getting the focus off our own symptoms is therapeutic.

My point was that people who are confused, hurting and fearful are often UNABLE to process logic. It seems that the very notion that such posters are NOT ABLE to stop is something that a lot of folks choose not to accept. Sigh.

Never ending exchanges can and do lead to frustration and stress. No one wins.

It seems unavoidable that someone feels hurt or criticised when a disenting opinion is offered. But how are solutions ever found if we can't just listen to each other without taking it personally?
 
ND
your post reminds me of a program i watched the other day,24hrs in a+e.

there was a young girl convinced something was wrong in her head,brain cancer or something.
the doctors kept telling her she was ok,she kept calling her mum and saying "they send people home and they die"
in the end they told her she had an obsession with using cotton buds which were giving her earache............
she was straight on the phone telling her mum she had an infection that could eat away her brain and kill her........oh boy.
they did get rid of her in the end but not untill they made her an appointment to see a psychologist.
bless her she could not help it.........such a shame.
 
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