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Janusz.w

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I am new to this forum, and apologise if this has been posted on the wrong page.

I am extremely worried that I might have ALS, and need your help/advice. I have managed to ruin mine and my families Christmas, and am desperately trying to turn things around.

I am a 45yr old white male, and have a condition called Barrett’s Oesophagus. This is an Acid Reflux problem, which increases my risk of Oesophageal cancer to 1 in 20. As a result I need to have an endoscopy every two years.

Approximately 3 months ago I one night had a shot of alcohol and almost immediately had severe heartburn/indigestion. I went to bed, and the following morning I felt better but had a feeling of food being stuck behind my breastbone, especially after eating but that ‘feeling’ seemed to remain 24/7. I began to worry it might be cancer of the oesophagus, and asked for an endoscopy, which (barring biopsy results which I get in two weeks), came back as clear.

Around this time I had also gone for a routine eyesight test (I wear contact lenses) which highlighted a problem with my field vision. I had a small area I was missing on the test, which the optician noted had been there two years earlier, but had not got any worse. He explained it was probably nothing, but should get it checked out. I then did what I know you shouldn’t, and googled my problem, which indicated possible MS. I again began to panic, and paid to see an MS Neurologist privately. He did a clinical exam (strength, reflexes etc) and stated I was ‘as strong as an ox’ - did not have MS, and in all honesty could not justify me paying to have an MRI scan as it was not necessary. He told me to try to deal with my anxiety, and be rest assured it was not MS. He said the field test problem was extremely common and rarely turned out to be anything to worry about.

This made me feel better, but that feeling in my chest remained, especially after eating. First thing in the morning it wasn’t as bad but seemed to get progressively worse during the day. I stopped eating as much and started losing weight.

I then read something on Google about ALS/MND, and immediately began to worry this was my problem. My anxiety levels went through the roof, and I was unable to cope with either family or work life.

Another symptom I have noticed for the last couple of months is a gurgling sound in my throat when I swallow saliva, especially first thing in in the morning, and a sort of crackling sound in my lungs when I breath in and out, (at the top of my inhalation/exhalation) again barely noticeable, and only first thing in the morning. I also seem to sneeze more, sneezing once after eating usually ... but not always. Is this a symptom of ALS?

Over the last week or so I have now however began to get twitching all over my body, especially in my legs, and over the last three days have noticed a sort of tingling/numbness in my left foot which when I’m walking is not apparent, but when at rest, and I move it, it feels ‘strange’ and tingly. I’m not sure, but the heel of my foot seems slightly numb compared to my right. I have done the ‘strength tests, i.e. jumping up the stairs with both feet, walking on heels and balls of my feet with no problems), but am worried this is the first sign of atrophy in my feet. I understand it tends to present in the extremities first?

I have been to my local doctors practice (GP) three times, twice over the last 10 days, (seeing separate doctors) all of whom have explained that I do not have ALS.

During one of the three visits, one of the doctors suggested the symptoms were more likely due to anxiety and my Barratt's, and sent me for a chest x-ray to calm my nerves (I thought it was aspiration due to my throat muscles not working properly). However the x-ray was clear.

I am now concerned that I have Bulbar ALS and that now after 3 months, it has progressed to twitching all over, (especially in my legs, primarily calves, buttocks area, arms and occasionally hands etc.) and has now began to show in my foot. These twitching symptoms are virtually continuous.

I am able to chew and swallow without apparent difficulty, but don’t know if Bulbar ALS might cause me to feel as though my food is not going down properly after swallowing.

I am now panic stricken and am permanently attached to googling my symptoms. The last time I saw my local GP, on the third visit, he put me on 80mg of Propranolol to cope with my anxiety.

If a Neurologist checked me 4 weeks ago (prior to my twitching), could things have developed that quickly and might he have a different opinion now?

I am constantly it seems in tears, and wake each morning to the same worry nightmare.

I understand that some of you using this forum might have been diagnosed with ALS, or have loved ones that have been, or maybe you understand the concerns that someone might have who instead has BFS, anxiety etc, and has managed to turn things around. I don’t know, but I want my life back.

Janusz.
 

ottawa girl

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Sneezing is not a symptom of ALS! See an ENT.

Get MND out of your mind - but I suppose you will not believe me because you have yet to believe your doctors. If you really seriously want to help yourself - stay off the internet and take your life back. This must be a deliberate and conscious choice. Every morning, wipe the tears and be grateful you have a wonderful day ahead of you.

As you undoubtedly know, anxiety can & will cause many issues including twitching. But, at least it's curable.
 

Janusz.w

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Elaine, thanks for taking the time to reply, that means a lot.
 

bluedog

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Bulbar ALS can start with solid food getting stuck in the throat. The food sticks during the pharyngeal phase of swallowing due to reduced motility and has to be washed down with water. This is not what you seem to be describing. Your problem sounds like it is during the esophageal phase of the swallow, which isn't typically a problem in ALS. Most likely a consequence of your reflux problem.

Sneezing after eating or drinking due to nasal regurgitation is a neurological sign. The doctor has the patient drink a full glass of water and then speak immediately afterward to see if the voice is gurgly due to water pooling, and the dr also sees if the patient subsequently sneezes sometime during the course of the exam. And of course twitching is an ALS sign. But your story and constellation of symptoms doesn't really sound much like ALS.

What did the neurologist say about your reflexes? If you don't have brisk reflexes, I think you can relax and believe the dr.
 

Janusz.w

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I'm not sure what brisk reflexes are. He just said everything was normal and to simply try and relax. The sneezing is very occasionally, but I do seem to think it's connected with eating, but not always, and just the one sneeze. Could the sneezing also be part of anxiety around eating?
 

bluedog

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I doubt the sneezing is from anxiety. I also doubt it is indicative of anything bad.

If the dr said everything was normal, your reflexes were probably normal too.

None of your symptoms are debilitating in any way. It may be best to try to ignore them and see if you start to feel better. If things progress, then you can push for more testing.
 

Mediasmart

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I don't have bulbar onset by my swallowing and speech (not to mention a tendency to drool) have had some effects. Where you describe your "stuck in your throat" location is more and more sounding like irritation from acid reflux. The food in the throat issue is very high up, like that last bit of bread is "stuck".

I have to agree with the others. Doesn't sound like you have it. The Docs tell you that you don't. Stop looking for it. You don't want to find it.
 

Janusz.w

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The sneezing thing is now worrying me if I'm honest. I just drank two glasses of water and didn't seem to gurgle when I spoke and didn't sneeze, but I know there's a tendency (if I do) to sneeze after I've eaten.
If it's not anxiety it seems it's neurological which scares me.
The food is held in my chest area, and seems worse when I'm particularly anxious.
 

CGARS

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Its pretty scary to think you may have MND/ALS, its even worse when your dr thinks you do.
Given that none of the medical professionals you have seen think you have MND/ALS sounds like good news, you must agree?
Im thinking you're way too paranoid. Please look at getting your meds balanced, and enjoy the gift of life you've been given.
Cheers,
Casey
 

Janusz.w

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My concern is that what I had was an osoephageal spasm, 3 months ago and that from what I've read, this can be caused by ALS. I know that it can also be caused by reflux, but coupled with my now twitching etc, I'm very depressed. It's difficult to obtain from the Internet whether a spasm would cause a persistent feeling of food being held in the chest, or occasional spasms.
 

True grit

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From what the doctors have told my husband, ALS begins in the extremities, then may go into the throat area. Reflux does not cause ALS. No one knows what causes it. Worrying about whatever you have is not going to do away with symptoms. The only thing worrying does is ROB you of your TODAY. Get up and thank the Lord just for today, leave the tomorrow in His hands and do something good for someone else, even if it is a walk around your neighborhood and a cheerful greeting to those you encounter. Keep a journal of what positive thing you did for someone else, beginning with your family and keep away from the internet. My husband has had ALS for 3 years and has a wonderful attitude and has been a blessing to so many. He was 230 lbs, 6'2' athletic built and now is 150 lbs not able to use his feet or hands, chokes on food, has a weaken diaphram., and confined to a power chair. He is leaving a wonderful legacy to our children and friends because of his attitude and smile. He can't change his situation but he can change how he reacts to it.
 

ECpara

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I sneeze 3 to 5 times after every meal. Got that from my dad! I also get twitches in my eyelids and legs. When I'm nervous. Am I worried I might have ALS? Heck no. My husband has Bulbar Onset ALS. His early symptoms, as well as symptoms now do not sound anything like what you are experiencing. Get on with the business of living and stop worrying yourself over these things.
 
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