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Swimmer7

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Learn about ALS
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Hey All,

I know the stickies are there to help alleviate fears from the worried well and to ensure that those who really need the support on this forum receive it. However, I think some of the blanket reassurances of the stickies can be misplaced (not maliciously of course).

For example, when commenting on the difference between clinical and perceived weakness- many use the example that a limb simply won't work - falling over your affected leg etc. But there's an initial stage of the illness where surely you have a weakness or a change in the dexterity of the limb that gradually gets worse, right? You don't suddenly have a limb that isn't working, it just gets to the point where it doesn't work and that's when you seek help? So therefore you could conclude that an observant patient would note the mild change in strength or movement and bring that to medical attention before there are clinical signs. Am I incorrect in suggesting this?

Also, I had an EMG/NCS last week, as I have been having cramps in my leg muscles/stiffness/feeling of dislocation/delayed response from the limb and the EMG was clean. I breathed a sigh of relief and said 'well that's great, the symptoms aren't caused by MND/ALS so, cos the EMG was clean?' My conclusion was based on the threads here telling me that the EMG is a 'Gold Standard' and if it's clean you don't have MND/ALS. The consultant disagreed and said that while she wasn't worried about me right now, you could still be symptomatic with MND/ALS and not show on your EMG yet. It is a degenerating illness, so surely she's right?

Anyway, I'm not initiating a debate between those diagnosed and those awaiting (any) diagnosis, just suggesting that some of the stickies can be dismissive for those who might well have MND/ALS.

Now that I've written this, I'm not sure how helpful it is, but if it occurred to me, it must have occurred to others.

I wish you all well.

Swimmer7
 
There is a bit more nuance in real life than any single statement can fit in, that is for sure. Anxiety and nuance do not interact well, though.

In the specific case of weakness - I'll tell you a story. I was a diagnosed, progressing UMND patient. I had been taken many times by surprise by weakness before, but now I thought I was really paying attention. I thought I was on top of it. Then I went for an initial evaluation by an SLP, not because I needed help at that point, but for when it came up later and to learn the danger signs of when to come back. My tongue was down to strength 3/5. I was shocked. It really can be that sneaky. I was still successfully speaking clearly, though I'm sure there was subconcious adaptation to make that happen. You don't know what words you are avoiding until they make you say them...
 
I understand what you are saying. I think the examples are true, at least in my experience regarding the failure issue BUT the failure may be very small. The first thing my sister noticed was could not button her shirt she could do everything else for a time. But before that small failure and for some time after it did not feel weak. My first symptom was ankle giving out in one specific movement. I was fine the rest of the time. And I was hyperaware both because of my genetic dfect and my work and exercise history. I can tell you the date and time it started and exactly where I was. But there was no prodrome I noticed. Same with next muscle that went. Complete and utter surprise!

The whole EMG issue is confusing. Mine certainly showed damage when I had the smallest of symptoms noted for less than 2 months ( I was in a research study or I never would have even gone to the gp yet) what you read is what the neuros say not our personal opinions but you add in Upper Motor Neuron disease which is undetectable on EMG and that muddies the water quite a bit.
So what did she say was wrong with you? Did you get an answer yet?
 
Tokahfang & Nikki J, thanks a a lot for getting back to my post.

I have clinical weakness of my left arm, it's like 50% weaker than my right, and the reflex has gone (suddenly)- though nothing appeared on EMG/NCS. This weakness came on suddenly, I probably could put a date on it.

My left leg is a disaster- I'm not dragging it, I'm not falling over it, but I am carrying it- it gets painfully tired within a few minutes of walking and the cramps in my calves and lately, my thigh are excruciatingly sore. I can't exercise, go for walks, commit to anything that involves walking or standing. It's been getting steadily worse since March.

So I had all the bloods you could think of (MG/Lyme/Copper), an MRI and there's nothing obvious there.

My MND doc is a specialist who has seen every case in Ireland since 1994 and THREE times she told me she doesn't think I have the disease- which is awesome of course- if it wasn't for the fact that my leg can't walk anymore and I have unexplained clinical signs in my left arm.

So I feel like I'm waiting for something else to fail before she (the specialist) or anyone can categorically tell me what's wrong. So the EMG/NCS were fine, yet there is clearly something wrong and I'm simply expecting those tests to show up something in the future.

Argh.
 
Swimmer, I agree with your assessment of the stickies. It is exactly why I urge people to NOT read the stickies and to, instead, use the search function. Unfortunately, as you also noted, the threads also contain misinformation. That just means that people need to be more careful when researching and learn to ignore the misinformation, some of which is now being blasted as boilerplate information to every thread.

IN MY OPINION, the stickies are a cluttered sea of irrelevant or false misinformation and should be deleted, except for "What it was when it was not ALS," which provides factual information.

I think that having stickies, however, could be very helpful. I would be easy to post a single sticky that would actually help people through the diagnostic process, although it might not be allowed because it would sound like dispensing medical advice.

One sticky that I think would be helpful and pass scrutiny is a template for first-time posters such as:

Template for New Posters to Use for Their First Question

Age:

Male or Female:

Date of first symptoms:

Current Symptoms:

Tests and results. For EMGs, get a copy of the results and post the exact results and summary or do not start the thread:

Do you have a family history of ALS? If yes, how many known members of your family?

Did you serve in the military?:

Do you have a history of vigorous exercise? If yes, explain:

What is your question? (Keep the question to
one sentence. You can ask additional questions in this thread
once the original question is answered to your satisfaction.)

This would cut down on lengthy, rambling posts, provided people who respond to the question don't go off on tangents and just specifically answer the question. No attacks, no ridiculous boilerplate replies, etc. It would also capture valuable information for researchers.

Regarding your case, as you and consultant correctly noted, an EMG can be done too early. But since you had such severe symptoms for so long before the EMG, it would be quite unusual for you to have ALS and your EMG to be totally normal. And some of the symptoms in your first thread did not sound like ALS.
 
Swimmer, I'm glad to hear that your doctor doesn't think you have a fatal disease and that your EMG is clear. I hope your diagnosis is treatable.

Bluedog, I must have missed your answer if you answered earlier: What experiences do you have that make you qualified to discuss ALS?
 
Edited. On second thought there is no sense commenting on Bluedog's posts. He has decided to attack the credibility of the "Stickies" (and somewhat the Forum) so it's between him and the moderators now.
 
Oh, another connected comment I had intended to make was that although it's repeatedly said here that MND/ALS isn't a sensory or pain syndrome, surely most people experience the muscle aches and cramps - which really are painful. You're more than welcome to correct me!
 
Muscle aches and cramps are common to everyone and can't be considered as a symptom. Everybody I have ever known gets them and they don't have ALS. Causes: dehydration, muscle strain, lack of essential nutrients, injury. The list goes on and on. Quit grasping at straws to convince yourself and others you have a fatal disease.
 
I will respectfully disagree with Dalvin. Aches are indeed non specific but cramps are often a part of MND at some point, not an isolated first symptom. They are painful but not a primary sensory issue any more than a broken leg is a primary sensory issue. Your sensory nerves are responding to a problem caused by the motor system.
And there has been posted here an old retrospective study showing that ALS patients had sensory abnormalities. It was not clear where in the course of illness they occurred and given it was retrospective how hard other causes were searched for. There was another study cited but I believe not posted that said sensory abnormalities occurred in a small percentage of ALS patients. It was not clear that causation was claimed. I have some sensory abnormalities myself but the cause is known and is not ALS. Would I have been included in these studies' statistics? I don't know
I am glad your consultant said not MND I hope she gave you avenues to explore and a plan to get to the root of your symptoms.
 
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Nikki,
Thanks a lot for that logical input.
That's exactly my problem- I can't walk for more than a hundred metres without my ankles going floppy, my calves cramping up and my leg needing to be carried. Walking around my apartment is fine as it's short small steps but once I'm on a pavement it's very difficult.

Dalvin, I'm a clinical nursing manager and have worked at some renowned hospitals (though not in neurology), so I have a medical perspective as well as a subjective one. Like any sane person, I'm just searching for a rational explanation for my presentation of symptoms, just because I (or anyone) goes onto a forum to discuss/decipher their condition, it doesn't mean they have a death wish. Often it's because they're being left high and dry by a clinician or they're forced to wait until symptoms/signs develop into a clearer clinical paradigm- this is an impossibly difficult situation, particularly (I expect) for those without medical insight.

Though many regular posters and those already diagnosed find it frustrating to deal with the worried well, for us it's a brand new dilemma, so we ask rookie, occasionally idiotic questions. Admittedly many will seek reassurances that cannot be given here but that doesn't we they/we don't deserve an opportunity to air our concerns without ridicule.

I wish you all well.
 
Swimmer7, as you wrote, ("I'm a clinical nursing manager and have worked at some renowned hospitals (though not in neurology), so I have a medical perspective as well as a subjective one.")

So, with all that you should know better than most of us who and how to get qualified answers to your concerns and questions... yet you persist on an internet Forum where nearly none are medically qualified. (?) Finally, with your employment history... you're not quite a "rookie" as you referred to yourself above. You should know (I'd think), better than most, your concerns/symptoms can only be best and properly addressed by a qualified physician.

Am I missing something? Just wondering.
 
Though many Admittedly many will seek reassurances that cannot be given here but that doesn't we they/we don't deserve an opportunity to air our concerns without ridicule.

Ridicule is NOT the first response from any of us. The "ridicule" is reserved for those actively seeking/desiring a death sentence; for those u wiling/unable to listen to reason.
 
Hey Clearwater, well I did say that I haven't worked in neurology hence the reason why I would visit a site like this, to get the perspective of those who have lived the experience. So in neurology terms, I do feel like a rookie and I know that many neuro conditions can present in different ways so who better to ask than a global audience of those live it?

My use of the word 'ridicule' sounds far more aggressive than the point I intended, for that I apologise. I can't imagine many people come on here with a death wish, rather just an illogical fear of something horrible looming and a desire to dispel it.
I certainly don't put myself into that category anyway, I'm just a guy searching for an answer to a problem using both the clinical route as well as the net, in the hope of reaching out to others who have experienced similar symptoms. Somewhere on the journey I hope to find out the cause, but I'm certainly not inviting doom or living in panic about my eventual findings.

I found this site to be very informative and helpful (particularly certain people), and for that I'm grateful.
 
I think Swimmer's concerns would be better answered, if not by professionals, in a forum devoted to diagnosing the problems he has.

People who have been cleared of ALS have a completely different road ahead, and should not take up this forum's resources.

Swimmer, are you cleared of ALS?
 
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