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Downy

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Hi all
I'm hoping for some input from people who have been through or seen first hand symptoms of ALS and in particular bulbar.
Basically for over two months I started with muscle fatigue when walking to work. It was really bizarre as I have never experienced anything like it. I went to my gp who advised blood tests and mri of brain and spine all clear. The last two weeks I have started to feel my neck and in particular my throat muscles feeling strange. I have difficulty swallowing saliva, this seems to come and go during the day. Food is also difficult to swallow and I need to swallow 3 or 4 times to get food down. I also wake up with a constant & really dry mouth since my symptoms began. I have seen a neurologist and had an emg test this has come back clear. My concern is obviously the swallowing and feeling my neck muscles contracting. Would an emg test pick up any irregulaties? Would this rule out ALS?
I was able today to do allot of walking like I used to maybe about 6-7 km. And I felt great. Prior to this I got really fatigued in my leg muscles and needed to rest with minor exertion.
 
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starente15

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I have seen a neurologist and had an emg test this has come back clear.

You're good to go. The EMG would have picked it up. Best of luck.
 

Downy

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The constant twitching toes on my left foot as well.
I guess I am thinking the worst as I feel so different.
I guess I haven't had the foot drop or typical symptom where a limb doesn't move when I want it to.
 

affected

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TWITCHING MEANS NOTHING MATE

ALS is a disease of the brain, not the muscles. You do NOT FEEL ANY DIFFERENT, you simply can't do things.

Please read the post titled READ BEFORE POSTING at the top of this forum section.

You are good to go.
 
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Downy

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Doesn't start with muscle cramping/ twitching?
Or is it more than you are unable to move a certain muscle when you try?
 

codyclan

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Seriously, no! No cramping, no pain, just unresponsive muscles . You have been cleared by a doc and an EMG -- no ALS. Time to move along. Lucky you. All the best to you.
 

ShiftKicker

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Downy, it looks like you've got two threads going here. You've been pretty definitively answered on both that your symptoms do not point to ALS. You even got some people answering in bold, which means extra emphasis on the "no" part. A health anxiety forum might be the place for you.

While people here say NO ALS, that means you can go back to your doctor and have them help you with your symptoms and continue to try to figure out what may be causing them.

People here are helpful when it comes to Motor Neuron Disease and related issues. If they say you don't have signs of it, you can trust them. Now, if you have any further questions about your health, ask your doctor. Asking here would be like calling your internet provider and asking them for help with your plumbing.

Best wishes
 

Downy

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Bulbar onset (Breathing issues)

Hi all, my pervious threads have been closed however over the last week I have been waking up due to shortness of breath. My twitching is now at a point where it's constant all over my body, especially my calves. I have had trouble swallowing as well. My gp advised to go back to neurologist. I'm 39 and fit and healthy otherwise.
My symptoms started 3 months ago with my walking gait and feeling extremelly fatigued at work. I have had blood tests, MRI scans and an EMG about 6 weeks ago, all clear, my neurologist was very dismissive and said not neurological at the time. However these new symptoms have presented and I am concerned. I have been struggling to work as a result of tiredness and breathing issues.
At the time of my EMG I only had occasional twitches and only had a needle inserted in 4 locations. I'm really scared especially as it is effecting my breathing. My oxygen levels were 95 when I went to the gp and I'm thinking if I need another opinion or neurologist who specializes in mnd. I'm sorry for posting again however it's such a long process and I have had so many tests.
 

ehd42

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Re: Bulbar onset (Breathing issues)

Hi Downy

If your neurologist found no symptoms of upper or lower motor neuron damage (muscle atrophy, abnormal reflexes, etc) then he would have no basis for a diagnosis of ALS. Nevertheless, the presence of increasing widespread muscle fasciculation (twithing) warrants further investigation. I would suggest getting a second opinion from another neurologist in a month or two. Repeated neuro physical examinations could help make a correct diagnosis since pathologic findings may develop slowly over time in a neurologic disease. The cause of your nocturnal symptoms of shortness of breath needs further study with an overnight sleep study and a complete pulmonary function test. There are many possible causes for your symptoms and ALS is nowhere near the top of the list at this point since your neurologist found no pathologic signs and your neuro lab studies were not supportive of a neurologic disease. Whatever your diagnosis, it seems that your symptoms must be causing you a great deal of stress and so seems that you could benefit from psychological counseling and perhaps antianxiety medication while you are undergoing evaluation for the cause of these worrisome symptoms.

Best wishes

Eliot
 

Downy

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Re: Bulbar onset (Breathing issues)

Thanks Eliot. I am not a person who suffers from anxiety. So I don't think medication at this stage is warranted. It's just the frustration of going to many GP's and having had so many tests without any answers. I just want to feel normal again. Unfortunatelyit feels like as time goes on my body is slowly deteriorating.
 

affected

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Re: Bulbar onset (Breathing issues)

actually your previous thread is still open so you should be posting there.
 

Atsugi

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Re: Bulbar onset (Breathing issues)

Downy, some people are sure they don't have anxiety, but their symptoms are indeed exacerbated by anxiety.

Let a doctor who knows you figure that out.


OOPS. My apologies to everyone. I only now read through all of Downy's posts.

DOWNY. You have no indications of ALS. Many REALLY WELL QUALIFIED people have told you that. You are wasting our time, when we could be dealing with people who have ALS or with people who might have ALS. You don't. Really don't.

IF you don't believe your GP medical doctor is giving you a good health investigation, then find another. Don't waste anymore time with neurology unless a GP medical doctor tells you to see them.
 
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Downy

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Hi all am update to initial post. Over the last week I have been waking up due to shortness of breath. My twitching is now at a point where it's constant all over my body, especially my calves. I have had trouble swallowing as well. My gp advised to go back to neurologist. I'm 39 and fit and healthy otherwise.
My symptoms started 3 months ago with my walking gait and feeling extremelly fatigued at work. I have had blood tests, MRI scans and an EMG about 6 weeks ago, all clear, my neurologist was very dismissive and said not neurological at the time. However these new symptoms have presented and I am concerned. I have been struggling to work as a result of tiredness and breathing issues.*
At the time of my EMG I only had occasional twitches and only had a needle inserted in 4 locations. I'm really scared especially as it is effecting my breathing. My oxygen levels were 95 when I went to the gp and I'm thinking if I need another opinion or neurologist who specializes in mnd. I'm sorry for posting again however it's such a long process and I have had so many tests
 

GregK

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Mod note:please stay in one open thread
 

WendyWooG

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Hi Downy,
If your EMG results were clear and your neurologist couldn't find any clinical signs of mnd then you don't have it. To try and pursue investigation into mnd seems like going down the wrong track, when all of your symptoms twitching fatigue and breathlessness could be being caused by any number of things that have nothing to do with mnd. It's best to go back to your GP and look at further investigation into what's causing your problems. If you fix your mind on one cause and that isn't the problem you can cause delay in getting a correct diagnosis. Don't try to second guess your doctors, be persistent and keep going back explaining your symptoms. Don't try to ask them if it's mnd ask the what it could be? And keep asking til you get a solution.
Good luck
Wendy x
 
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