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rose

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There is another thread over on the PALs forum that asks how we were diagnosed. I'm thinking that the diagnosis process is usually pretty long and involved ~ more than many want to actually chronicle here.

If one wants to know the criteria that needs to be met to receive a diagnosis, there is a Standard called the El Escorial.

It says that to investigate ALS there should be: (listed in the following order)
Weakness
Atrophy
Hyperflexia
Spacity
Progression over time.


Testing to confirm includes:
EMG & NCV
Neuroimaging
Biopsy
Neuropathology


I wonder if maybe the question is more of what was the first symptom? And I think that for those that have been diagnosed, it is that the person discovered they could not do something they used to be able to do, and took for granted up til that time.

For me, I was unable to converse like I used to. (bulbar onset) For those with limb onset, it usually seems to be everyday physical type activities that gives them difficulties - anything from holding a plate or climbing stairs, to buttoning a shirt.... ~ not seeing how many stairs one can climb after one has noticed another possible symptom, or trying to measure if that dinner plate feels heavy. The realization finds the person, not the other way around.

For most, it is a gradual perception, rather than a sudden revelation.

Sure, there are other things, muscle cramps, fatigue, etc, but the reoccurring theme is inability or difficulty with accomplishing a voluntary movement that hadn't caused trouble for them in their lives before.

Also, notice that even though fasciculations are unsettling to experience, that they are not even listed by the El Escorial :)
 

BethU

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Rose ... that's a great piece of information. I wish it could appear when anybody clicks on "visit the forums."

You have another good reminder on another thread that many of the long-time participants in this forum have NOT been diagnosed with ALS. In fact, some have been told specifically by their neuros that they do NOT have ALS.

It must be really confusing to newcomers to find people messaging about a laundry list of symptoms that people with ALS know have no relation to this disease. No wonder newcomers get scared and doubt what their neurologists are telling them.

I guess we just have to keep reminding people that many people on the forum do not have ALS, and their symptoms don't relate in any way to ALS.
 

planningguy

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It's been mentioned a handful of times before, but it might be nice to have a diagnosed flag under a person's avatar. I know many of you have been good citizens and put it into your signatures, but I kind of like having some offbeat quote. Maybe if the signature size was increased a little bit...

Anyhow, I do agree that it can be confusing to people, and I think that your point s excellent Rose. I have been guilty of the "How many push ups can I do, flights of stairs can I run up, people I can bean with a tennis ball..." approach.

Robert
 

olly

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i so agree with what rose is saying.
it amazes me how many people we get who think they have mnd from odd little symptoms and the internet.
everything,I MEAN EVERYTHING has to be ruled out first as there are so many many other things more possible.
it took several years of test after test,serial mri,s and genetic testing (it a wonder i have any blood left) to rule out all other possible causes.
as for fasiculations,i have had these for some years before diagnosed and never gave them much attention.
as for mnd,that was never even on my possible list ,i was convinced i had ms
i am upset and sad i had to move out of my home because i could not manage to get up 12 steps due to weakness.
i know there are some here with genuine ,real concerns and going through testing but no diagnosed yet. trust me,i really know what you are going through.
 

rose

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Caroline, Beth and Robert, I agree that even on this forum that is very well organized there isn't an easy to access (read: can't miss it if you try) list of symptoms that the medical and research community feel have the potential to be motor neuron related.

This post was not to minimize anyone's concerns that have other issues, but rather to make it easy to see if they need hang around an ALS forum, or maybe start looking for other information and support boards.

Search engines steer many people here that would be better served to have never known that ALS causes twitching (I didn't).

This particular forum should be a haven and source of information for the undiagnosed. It is such a joy when a member posts that ALS has been ruled out, and that they have "X" condition, disease, whatever, instead. Its hard to read of fellow members who continually run into brick walls trying to get a diagnosis, and of course, we're collectively sorry to learn when yet another person does learn what they have is MND.

But, those that think they could have MND when they have either no symptoms that point toward ALS, or many other manifestations that point away from it, don't gain help here by reading and reading until new symptoms find them "by association".

Caroline, I hope you get to where you don't miss your old home so much, I know its got to be hard. I even miss your garden, and I've only seen pictures of it!

Robert, I understand about wanting a less than mainstream quote with our siggy. I tried and tried to make my favorite R.W. Emerson quote fit under mine, but just couldn't pare it down enough. - Hence the "Go Steelers" ~ nothing like going from a quote from someone of this stature, to the NFL 8)... Incidentally, did you know that Emerson is buried in Sleepy Hollow Cemetery? ... a fairly cool place to be interred... I'm actually considering moving on to Robert Frost with my signature line. We'll see... after the football season is over.
 

rose

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We were talking about this post last night here at home, and I remarked that it seemed weird that none of the worried posters gave any indication that they had read this thread, not one remarked about it, like: I read such and such, but still.... ...

So, I am officially inviting those that are concerned about their symptoms, to read the quotes taken from the the El Escorial, and try to help us understand why reading this does not give them the answers they are seeking.

It isn't my intention to come off as unfeeling to anyone, the whole point of having a "Do I Have ALS" forum is for those that want to know just that. But, I don't understand why there is no feedback from those that should gain the most reassurance from the this information. Is there actually anything that can be said here to alleviate fears?

I also wonder if there are any people here that have fasciculations, but are not having progressive weakness, etc, if they have tried to find a benign fasciculation online support group? If so, is this helpful to them?
 

planningguy

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Rose,

I started a thread on Cyberchondria, based on an article in the Times today. It was really interesting because web-diagnosis has become a big enough deal that Microsoft shelled out dollars to study it. After Al or CindyM approve the link, you can check it out. I think it dovetails nicely with your thread.

I often wonder about those who won't let go of their symptoms being the worst case. It's something I struggle with myself. Ultimately, I think its a form of isolation. The medical community has reached the point that unless you're seeing a high end specialist, you can expect 10-15 minutes of a doctors time. Many Dr's have lost the art of bedside manner, and don't ask follow-up questions to their diagnosed process.

When someone is scared and has a health issue that family and friends can't help them with, they turn to the resources available to them. Their doctor gives them fifteen minutes, half of which is the Dr. explaining what he or she supposes is going on. The person leaves the office, and realizes that they forgot to mention a symptom, or that they still have questions. With your Dr. the best you can hope for is to write the questions down and wait for the follow-up appointment.

What do you do with the spare time? You turn to one of the few places you can, the Internet. You find a forum with nice people, and ask your questions. There might even be a banner with the smiling Dr. you never seem to get (Who is really a stock model who struggles with foot fungus). This forum is really good. In fact I will go so far as to say it is the best I have ever participated in. People care, and answer questions, but at the end of the day we can never replace a medical professional. So people are torn, and I think we see a lot of the questions and doubts doctors aren't answering, or people can't wait to weeks to ask.

When I was in grad school, my thesis professor's research interests where medical sociology and community health (and pedagogy, but that's not exactly relevant here ;) ). He was a brilliant guy, and believed very firmly in healthy lifestyle plus quality care brought the highest quality of life. Mental health was a large component of the healthy lifestlye component.

We would often discuss why people pursue alternative medicine when research of many forms show that there are limited benefits beyond placebo effect. His response always made me think. He said, because practitioner's of alternative medicine usually listen. Depending on the treatment, a practitioner may spend half an hour to an hour with a patient. Many forms of alternative medicine focus on getting the body into its natural state, and so discussions of mental health and personal struggles are fair game.

In a weird way that brings me to my favorite poet: William Carlos Williams. Some of his work just might be short enough to make the signature cut. He was a fascinating guy.

Take care,

Robert
 

olly

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as i already said if you had als or any other mnd ,fasiculations are the least of your problems,its everything else that go with them.
 

awieleba

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Hi Rose,

You are always so helpful and willing to share, you are an amazing person.

I felt ok about what you wrote but I just have so many complicating factors. I dont know if you counted me as nervous poster or not. I really could have been weak before the twitching and not had known. I was pregnant and I was active (playing tennis in first trimester) but crashed in the last. I felt like cement and jsut did not want to move. I had problems breathing and a pain in my calf. ALL these are explained through pregnancy. Not uncommon to have. Then 6 weeks after giving birth I got the severe colon infection and was in and out of hospital for 3 months. I was weak, but thought it was from birth and being sick and having 3 kids. I rember my twitching was in my right hand that i feed the baby with and I thought it was nothing. (it was more of a spasms then twitch). I went to the rhuemy I was seeing and said that what is bothering more than the joint pain is the thigh weakness. I had it 3 and yrs ago for 3 weeks and went away. Then the body wide twitching set in. SOOOO, I think that i had weakness before twitching, it was not the I cant do things or lift a plate weakness but subtle. The twitching got my attention but I think I was weak for me prior but with all my illnesses who would not be.

I guess I dont look as myself as worried poster that has just twitching. I have in the last few months lost alot of hand muscle and my hands hurt 24/7. I am having a hard time with them. My feet are bad too, ps..they look like yours but worse. and my hands are really bad inbetween thumb and index. I am weak and my mouth looks like yours too. I always thought the bite marks upfront were normal. I have that same ball ? or lip thing that you have. I trully feel that is a matter of time for me to get a diagnosed. ***twitching is the LEAST of my concerns. It started out as a concern but I can honestly say that if ALL i had was twitching and I could still do my active things (tennis) and I had NO muscle loss, I would care less!

i appreciate all that you share. Did you have pain in your hands or feet way back, like a few yrs prior?
I still hold hope but it gets harder every day. I was suppose to have emg on MON but neuro and I felt like it would be better after first of year. So, JAN I will have a repeat emg and see what it says. I beleved that it was autoimmune but I still progress and it is just really hard for me. I am sorry that I have posted this and brought down the thread, I have been struggling emtionally as of late..and physically. I feel guilty even saying that without a diagnosed but I am getting worse.

Thanks to all......sorry to be a downer.....better get my lexapro refilled ASAP
 

BethU

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BFS Support Group

Rose ... your messages have been so informative and (I hope) helpful to newcomers who are worried about these symptoms. I hope they're reading them. Thank you for posting.

There is a BFS support group that appears to be a good resource. It has valid information, and repeats what we keep trying to tell people here: Benign fasciculations are much, much more common than ALS, and BFS (Benign Fasciculation Syndrome) is a "real" diagnosis ... the syndrome has a series of symptoms that match what many "worriers" on this forum complain about, whereas ALS symptoms do not.

The URL is: http://www.nextination.com/aboutbfs/
 

rose

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Beth, thank you for providing this. Maybe Al can come up with a post it - sticky - whatever at the top with this helpful link. Perhaps even "stick" this 8)
 

planningguy

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I have read some fo the BFS information from the support group, and if it is the same source they even have posts regarding tongue twitching, and how BFSers (I hope that works ;) ) do get them. There was even a couple of neat posts from individuals who had tongue twitching for years, and no other worries.

Robert
 

broodjeaapspeciaal

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Some quality posts on aboutbfs.com that can be found on the forums :

BFS in a nutshell - A great overview of what BFS is -

http://nextination.com/aboutbfs/forums/viewtopic.php?f=5&t=201



Why you don't have ALS part 1 - Another excellent post -

http://nextination.com/aboutbfs/forums/viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 - the last part

http://nextination.com/aboutbfs/forums/viewtopic.php?f=5&t=11434


Most people who walk into the neurologist's office with common neurological symptoms like pins and needles, pains, twitches etc and fear that they have MS or ALS have underlying anxiety. I've posted a link to a good article about that somewhere on these forums. BFS comes with so much anxiety and fear that it can isolate you on a social level. People lost their jobs and relationships because of it. The first thing you need to do is getting a correct diagnosis. When a neurologists tell you right away that you dont have ALS, believe him. He has YEARS of experience, and just because you've read something on the internet does not make you smarter in any way. After that, you need to work on your anxiety if you still doubt about the diagnosis.. because things can go horrible wrong and out of control.
 

Al

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Homer Simpson once said " if you build it, they will come" I've found that if you write it , stick it, capitalize it, italisize it, underline it or bold facce it; they still will not read it. If they do read it at least 5-10% won't believe it anyway. Look at the people every week that ask the same questions in the problem section. Do they read the sticky's? I think not. Do they read the FAQ? Don't think so. Do I think they'll read this? Probably not but at least I've had my weekly rant and I feel better. Happy Thanksgiving everybody.

AL.
 
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