Old 02-18-2018, 12:54 PM #1 (permalink)
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Originally Posted by Angiegal View Post
Not that my opinion matters in the least, but what about seeing a psychiatrist? With 2 GPs and 2 Physio's who are saying "nerves" maybe it's time to start looking at why? Just a thought.

Angie
Getting any kind of a diagnosis, particularly when it may relate to a very elusive end, can be very frustrating.

The first real Neuro I went to with my symptoms ordered an MRI and a few other tests and when he found nothing he basically dismissed me stating that it was 'Abulia'..... if anyone doesn't know what that means they should look it up.......
It's a treat.... basically means 'a total lack of motivation'......
I sometimes got lost for words and he said that, basically, I was just to tired (lazy) to finish my statement.
He gave me Prozac and sent me home.

I am not saying that someone does not need to explore options such as a Psychiatrist, but please... symptoms such as a loss of range of motion in the thumb....... anxiety?

Side note... I find that ALS does 'feel'....
I 'feel' tired, I 'feel' fatigued, I 'feel' weak... two years post diagnosis and I can still do everything I could once do only in a much smaller scale or capacity.
Examples: I 'can' stand on my tiptoes...but it 'hurts' and I can't do it long. I can even stand on the toes of one foot.... just to see if I can.... then wish I hadn't; but I 'can'.
I 'can' lift a 40 pound bag of pellets... but I wished I hadn't because it 'hurts' and gives me muscle cramps... then makes me 'feel' 'weak' and queasy for 3 days.
I 'can' shovel snow for a half hour.... but I wished I hadn't because it 'hurts' and gives me muscle cramps... then I pay for days with 'weakness', 'fatigue (muscle fatigue)', pain.
I 'can' button my shirt and tie my shoes... it's sometimes hard because my fingers are stiff, and it takes effort to make them do what I want sometimes... and they 'feel' weak and tired... but they 'do' what I want... they don't 'fail'. (yet..... I try to be careful of my words so that they don't come back to bite me...)

ALS travels many different courses and has many different faces.
Even on this board I see many many variations.... even many different ends...
Some people are very fast movers. first a digit quits, then the limb, etc... then they are gone in less than a year.
Some people have been diagnosed for three years and they can still walk. Perhaps very slowly, and not very far.... but they still can.
Some people can still function pretty good at most things but they just can't breath.... or eat.... or talk.

My very first symptom that I can recall, pre diagnosis, was that I couldn't throw a horseshoe as far as I should have been able to... silly, I know, but.....
Most of the symptoms that I finally went to a doctor about in the first place were basically things like balance, brain fog, fatigue, overall 'weakness'... my GP suspected a mini stroke so that was what they were looking for.
My first 'real' 'physical' symptom that I complained about was basically a 'sore' ankle. Two years later I 'can' still walk on this ankle... though if I walk on it any length of time without an AFO it 'hurts' and gets 'weak' and starts to turn under... but I still 'can' 'do' it.
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Old 02-19-2018, 01:49 AM #2 (permalink)
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Default Re: Symptoms worsening in 2 months

Just to clarify for newbies, Preacherman's timeline, which includes symptoms like loss of strength in specific activities and impaired speech, are very different than "simply feel tired" or "widespread twitches" or "dents" that others do not see or physicians consider normal. Most of us, for example, are asymmetrical in some respect.

So in the stickies when we say it is about "failing, not feeling," that is not in contradiction to stories like these.

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Old 02-19-2018, 01:56 AM #3 (permalink)
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Default Re: Symptoms worsening in 2 months

I agree wholeheartedly with Preacherman. Early symptoms and progression are variable and unique. I was diagnosed in 2017 but had subtle and insidious symptoms as far back as five years earlier. Reading the DIHALS board is frustrating when the same handful of individuals invariably (and often rudely in the case of one particular individual) dismiss legitimate concerns related to the possible onset of this disease. This is why I NEVER posted on DIHALS before I had a confirmed diagnosis. Frankly, I couldn't see the point of it.
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Old 02-19-2018, 10:49 AM #4 (permalink)
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Default Re: Symptoms worsening in 2 months

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Originally Posted by dani001 View Post
. I'm just going to wait until I get to the point where someone will take me seriously .........

Take care all
Dani
Guess this is kind of one of my points.......

Why do we need to 'wait till it is bad enough that someone will take us seriously'......?

I am certainly not suggesting that every little twitch... or indent.... or 'feeling of weakness' is suggestive of any terrible disease.
I am only stating that just because things aren't 'typical' or 'the norm', we should not simply dismiss symptoms....
Because, who knows.... without specific testing we simply cannot just 'rule out' something because it is not a 'typical' symptom.

And to, for example, recommend a Psychiatrist just because some doctors are baffled.... or symptoms don't line up..... ?

Why can't people be 'taken seriously' until, through testing or whatever other diagnostic means, it is firmly established that their problems my be 'emotional' in nature.

And back to those symptoms......
'Failing' is what happens when symptoms are far enough advanced that it is pretty obvious that there is something very serious going on.... but it had to start somewhere.

There are some people that have been through here where they reported that they were going along just fine when, one day, something just 'quit'.
But there are many more like me.... where they just started to notice subtle little changes.... perhaps we just became fatigued doing something that, a year ago we would not have.
Or we start complaining that things 'are not as easy as they were', and your spouse dismisses it with, "You turned 50, what do you expect" ?

For over a year I thought that my problems were probably MS or something similar.... the weakness waxed and waned... problems with dizziness, brain fog..... ALS was not even on my radar... not even really in my vocabulary.
I was shocked and completely at a loss when my first MRI came back clear....
Then the first Neurologist that I saw said I was just too lazy to finish my statements?
This was a doctor..... a neurologist.... in fact, the top rated neurologist in that local area.

And we think we can just simply say, "No ALS there....."
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Old 02-19-2018, 11:21 AM #5 (permalink)
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Default Re: Symptoms worsening in 2 months

Sorry if perhaps I seem to be a doom seeker to some... I will digress a bit and try to make a couple of things clear.

When the neurologist who ordered the NCV/EMG finally believed there was at least a problem of some sort and we got the testing, my first EMG was 'complicated; suggestive of MND but not diagnostic of...' but it was very clear that there was some sort of problem. (actually the EMG doctor later told me that he was sure after the first EMG but could not really confirm it without a second EMG and a history of some progression).
By the second EMG there were issues in probably half of the major muscle groups... some small issues and some really obvious issues... so the diagnosis became really obvious (after of course ruling out the many other causes of such problems).

I do not believe that these little phantom problems, weaknesses, twitches, etc mean anything without extensive testing.

I have never had a clean EMG so I can only guess at what point anything would have showed up in one, but I will say that many of the muscles that showed obvious problems in the EMG two years ago are just now stating to give me problems so I would venture a guess that an EMG would have been dirty when I first started complaining.

I guess the answer is that if we have real concerns, we need to be persistent until we finally have real answers.
But once we have real answers we should trust them.
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Old 02-19-2018, 11:25 AM #6 (permalink)
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Default Re: Symptoms worsening in 2 months

Preacherman, perhaps airing your grievances on the general discussion forum would be more appropriate than someone's thread. Dani has concerns and perhaps addressing those on Dani's thread is more polite and anything else is better suited on the general discussion.

As far as I've seen and experienced, to address your point, there are numerous people that come here year after year, clean EMG after clean EMG, with no clinical weakness, no objective atrophy, and no failure, yet they will not take that they do not have ALS... from anyone. This, I believe, is where the frustration comes through. No one is here to massage someone's neuroses nor should they be made to feel like they should.

In my short time here, I've seen three or four people fib about being diagnosed with ALS, multiple people set up fake accounts to troll terminally ill people for some sick thrill of pretending to be scared (or not pretending) of having this insidious disease. Your symptoms appear to be the exception and not the norm, and when forum members address concerns from people visiting the forum, it is the overall text book ALS symptoms they are referring to.

Twitches, dents and dizziness are not ALS symptoms, and won't be addressed as such. It is the whole picture together with EMG, clinical weakness, atrophy and other tests ruled out that makes a more realistic picture of possible ALS. Not the aforementioned symptoms on their own.

Just my opinion on the matter
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Old 02-19-2018, 11:49 AM #7 (permalink)
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Default Re: Symptoms worsening in 2 months

My apologies to Dani.....

My initial response seemed to me very pertinent to her particular concerns.

As far as the rest.... please see my last post (prior to this one)...
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Old 02-19-2018, 03:21 PM #8 (permalink)
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Default Re: Symptoms worsening in 2 months

Some thoughts on DIHALS, especially ones with non-textbook symptoms:

Lots of folks have lots of symptoms--all the time. For instance, one might have fatigue, dizziness, ringing in the ears, and a muscle that doesn't respond.
The muscle of course, would be the big deal demanding attention. But then, if that person were to say "my first symptoms were fatigue and dizziness" I'm afraid that just wouldn't point to ALS. Everybody is fatigued. It's a symptom of living in the 21st century.

I say this because other websites list a huge bunch of symptoms. They usually say: "People with ALS have reported these symptoms: A,B,C..." But that doesn't mean that A,B or C are "symptoms of ALS."

I think the biggest thing we need to do is send new DIHALS to the appropriate doctor (including mental health if needed). As you know, there are indeed sick *******s who troll us, and there are a LOT of kids who are stressed out and can't let go of their irrational fears. When I see them, I think some need gentle reassurance, some need firm guidance, and some will only respond to a big butt-kicking. I hope we get it right every time, but...
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Old 02-19-2018, 08:05 PM #9 (permalink)
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Default Re: Symptoms worsening in 2 months

Mike, as you wrote...

"As you know, there are indeed sick *******s who troll us."

You left out three words... "a lot of"

"As you know, there are (a lot of) indeed sick *******s who troll us,

And the ones you refer to as kids... a lot of them are just having fun.

Go back and scan the numerous Threads that start with nearly the same first sentences or two and end with nearly the same sentences. "God bless, blah, blah".... the usual crap.

Nearly the same paragraphing structure and wordage.

But do what you gotta do to help those who are truly concerned and just may be looking at ALS or one of the many MNDs.
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Old 02-28-2018, 06:30 AM #10 (permalink)
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Default Re: Symptoms worsening in 2 months

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Originally Posted by shieldsee View Post
I agree wholeheartedly with Preacherman. Early symptoms and progression are variable and unique. I was diagnosed in 2017 but had subtle and insidious symptoms as far back as five years earlier. Reading the DIHALS board is frustrating when the same handful of individuals invariably (and often rudely in the case of one particular individual) dismiss legitimate concerns related to the possible onset of this disease. This is why I NEVER posted on DIHALS before I had a confirmed diagnosis. Frankly, I couldn't see the point of it.
In an effort to help I would note that it is sometimes difficult to attribute such things as rudeness and dismissal to a persons written words although sometimes it is perfectly clear. Emails, texts, and blogs are notorious for conveying unintended meaning. This forum has too much valuable information to dismiss its content because of a few unintended slights.
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