timeframe to DX

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Alexandre

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Hi,

I read that the actual time to get a diagnosed is around 13 months.
I know a lot of people have symptoms for a long time before they get to a neurologist. (because of not going to the GP or the GP says nothing is wrong and so on)

From the moment you got to the neurologist, how long did it than take to get diagnosed?

Alexandre
 
Hi Alexandre,

My diaphragm was the first thing to go, and I was getting pretty bad narcolepsy due to lack of REM sleep (at onset of REM I stopped breathing, which woke me out of REM but not all the way to consciousness). On a Monday I went for a sleep study to get fitted for a CPAP. They gave me too much oxygen and I went into a carbon dioxide overload crisis and was sent to the hospital. There the neurologist first diagnosed myasthenia gravis on Tuesday, but corrected to motor neuron disease by Friday. The new neurologist reconfirmed the diagnosis about three months later.

Is this an answer to the question you asked?
 
Wow, and I thought my diagnosis was fast. 4 days has me beat by a lot! I first went to the neurologist in May, and was DX by a different neurologist at the ALS clinic in August, so 3 months. My 1st neurologist had a pretty good idea within about a month but he didn't want to make the DX, he thought I should see the ALS specialist.
 
Six months symptoms to diagnosed.
 
Thank you all!
I hope others will also answer.

It seems so that from moment someone goes to a neuro diagnosed will be made rather quickly
 
9 months till the doc and the neuro admitted UNOFFICIALLY the diagnosis to me. But the protocol here means going through the tests again and again before official diagnosis - so now 10 months have passed and have more RMIs planned in the next two months. Meanwhile I am wheelchair bound
 
Alexandre,

Why do you want to be diagnosed with ALS? What do you get out of this imbecilic back and forth between you with your narcissism and your hypochondria and the members of this forum? Do you have nothing better to do with your time than to stare for hours at your body, counting every twitch and mapping every dimple that you see?

You have a diagnosis -- BFS. At this point in the diagnostic process, ALS/MND is off your doctor's radar screen, so why do you keep bringing it back up? Are you too egocentric to listen to anyone's opinion but your own, or are you just too dense to realize that, in refusing to accept your good news and get on with your life, you are spitting in the faces of the people that you beg answers and comfort from.

You have been handed the key to your freedom, yet you toss it away as if it were a bit of trash. We'd pay a substantial price to obtain a medicine that would allow us to trade what we have for what you have, yet you won't accept it and, in fact, actively reject the notion that you have your answer and that you will have many more days to gaze at yourself and wonder. To me, that attitude is presumptuous and offensive, and makes it clear to me that further discussion with you by anyone here is certainly a waste of time.

No, Alexandre, I'm not going to answer your silly question about how long it takes to get a diagnosis and I would recommend that no other PALS here answer that question either. Our answers will not matter to you, and you will just twist them to say whatever is needed to support your half-baked theory of the week. So, from me to you, live long and prosper, young man and thank the heavens that you are likely to be able to do it.
 
It's true I got the BFS diagnosed but the last couple of months things have happened.
As I mentioned here I have a huge dent between my thumb and index finger. What I believe is atrophy.
I read an article of how to test this to be sure if there is clincial weakness.

Find a very thick encyclopedia or two moderately thick books. Place book(s) end-up on the floor. Pick them up with thumb on one side and fingers on the other, without palm touching. Clinical weakness will prevent you from doing so, or, if you're able to despite actual ALS clinical weakness, you will immediately feel an uncharacteristic gripping deficit.

When I do this I have pains in my right dominant hand where the atrophy is, on that side the books feels heavier - the unharacteristic gripping deficit.
I don't want you to think I'm a hypochondriac, but this shows something is going on.

I just wanted to find out if neurologists wrong diagnosed a lot when it comes to BFS - ALS or that it can take so much time for a neurologist to finally understand it's ALS.
 
Alexandre,

I know how it feels to wonder about ALS. I too was obsessed at one point in my life. I then realized there are a lot of things that could be causing my symptoms, including but not exclusively limited to, ALS. I don't think you are looking for the ALS diagnosis - who in their right mind would? But many of us are looking for SOMETHING because we know our bodies.

To answer your question it is like herding cats. Some people get a quick one, and some take months to years.

And, LISTEN to me, OK? There are many neuromuscular conditions, and non-neuromuscular conditions, that can cause your symptoms. And sometimes those can take a LOOONG time or a short time to diagnosed. The docs are the only ones that will figure it out. Hang in there.

There is no correct answer to your question. Best wishes.
 
Alexandre,

In your mind, do you get the fact that MND diseases are actually quite rare, and that the reason there is so much info on them that shows up on internet searches is in great part due to the whole fear perpetuating itself over and over in a snow ball effect? The more people google symptoms on the internet, the quicker ALS and MND rise to the top of the queue.

On the other hand, even if you have a neuromuscular syndrome, which is only a fraction of scenarios which can cause a problem with muscles, look at how many variants there are to rule out:

Neuromuscular Home Page

Myopathy Differential Diagnosis

Neuromuscular Syndromes

Polyneuropathy Differential Diagnosis

If your doctors are not looking in this direction, there is good reason for it, because they're the ones with the training to understand what your symptoms could indicate.


Here is a link I posted previously with examples of normal and abnormal neurological exams:

NeuroLogic Examination Videos and Descriptions: Cranial Nerve > Normal

I hope all of the above will help you see that just because an internet search has connected your problems (as you perceive them) to ALS, that there is much to rule out, even if you were to have problems associated with a MND.

good luck to you, I hope you're able to get some answers, or have some peace. Hopefully both.
 
irismarie, we sound very similar. It's been ten months since I was showing symptons and I struggle now to walk. At my last two visits (last week) the docs all but said I have ALS, "I'ts looking more and more like MND". And yes they ordered up a whopping new MRI and EMG. They shoot horse don't they? One doctor said "try and walk as much as possible, we don't want to see you in a whellchair". I had to laugh...like trying is to going to effect anything. Fifteen minutes on my feet and I can't move my legs.
 
Clinical exam by Neuro on Thursday. Dx Monday after EMG/NCV. Second opinion 2 weeks later. Third opinion 5 months later at ALS Clinic.

AL.
 
from first notice of symptoms to seeing GP - 5 months
from seeing GP and everyone in-between , ending with Dr Bourque - 10 months
from clinical appt to diagnosed - 2.5 hours

Glen
 
the first nero i meet with he told me that day he was scared it was als and sent me to anouther nero he also said it was als. i am on my third nero and im sure her will say the same so all of 2 months for my diagnosed
 
Maxwell,

What are your symptoms?
 
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