Old 01-03-2016, 11:57 PM #16 (permalink)
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Default Re: Gastroscope Detected Possible NeuroMuscular Condition

Don't be alarmed. Try to calm down. If your tongue was affected by ALS, it would be paralyzed, lying limp and useless, unable to swallow or speak. Go see your doctor and stay away from ALS sites like this one.
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Old 01-04-2016, 12:21 AM #17 (permalink)
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Default Re: Gastroscope Detected Possible NeuroMuscular Condition

Thank you. I've definitely been driving myself crazy. Hope I won't have any need to report back to here. Thanks for the reassurance.
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Old 01-25-2016, 04:26 PM #18 (permalink)
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Default Re: Gastroscope Detected Possible NeuroMuscular Condition

Update ...
I went to see my family doctor today. He did a far more intensive clinical than the 2 neurologists I seen. Neither of them tested my reflexes and today my family doctor did and I have bilateral hyperreflexia. I have had changes in my mouth where I am to tired to talk and my cheeks have been feeling very weird. I can't even explain it. Feels tingly but somewhat painful. I can't stand for a long period of time without my body trembling. My tongue is not as long. I know this because I've been insane and would check it frequently.

I had to remove myself from other medical and ALS groups because I have been so fearful of my symptoms. The more I read the more I can relate but doctors keep writing me off. I just needed to vent today. I can't help but think this is ALS... I was asked to see an ALS specialist in October but did not refer me. Now I am being referred to London Ontario...

This has been one long year and some symptoms have either gone away or come and go. While what is going on in my mouth feels like it is getting worse. However I am not sure if it is caused by stress and anxiety. Thank goodness for prayer service tonight...
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Old 01-25-2016, 04:29 PM #19 (permalink)
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Default Re: Gastroscope Detected Possible NeuroMuscular Condition

Thanks for the update.

Still no symptoms of ALS onset which is great!

Bilateral hyperreflexia is usually not a great concern BTW.

Keep working with those doctors and I think you have done a wise thing to stay off health and ALS sites, except that you have come back today. Try to go back to that place and wait out your next appointment. Sometimes it really helps to volunteer with people in serious or terminal health situations to do something active and positive while on your own doctor journey.

All the best
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Old 01-25-2016, 04:55 PM #20 (permalink)
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Default Re: Gastroscope Detected Possible NeuroMuscular Condition

I also forgot to mention one side of my face looks droopy in pictures but not in person. My smile is uneven. Definitely something scary. I just try and keep telling myself maybe most of this is all in my head. Then when you physically see things change it becomes a concern to me.
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Old 01-25-2016, 05:02 PM #21 (permalink)
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Default Re: Gastroscope Detected Possible NeuroMuscular Condition

Please go back to your decision to stay off these sites.

No PALS presents a droop in one side of their face NONE

We have helped all we can truly, I'm sorry for your issues. Now we have to help our members who are dying from, or caring for this terminal disease. (if you were my husband and you had ALS you would have already died - that's what this disease is)
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Old 02-11-2016, 12:09 PM #22 (permalink)
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Default Re: Gastroscope Detected Possible NeuroMuscular Condition

My legs tremble any time I lift them slightly off the group or when I put weight on my hands like cooking, cleaning etc... My balance is off. Twitching like crazy. Have a dent on the side of my leg where I started twitching 14 months ago and still twitches now. My right calf will not grow muscle back. Just noticed yesterday I walk with my right foot out which I am assuming is compensating for my balance issues. Along with all the damn things going on with my mouth. Something is wrong, I cannot wait long enough for my appointment.
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Old 02-11-2016, 12:59 PM #23 (permalink)
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Default Re: Gastroscope Detected Possible NeuroMuscular Condition

Anitadeanne, several doctors have examined you. Your EMG was normal. Several experienced people here have answered your questions. Everything points AWAY from ALS and yet you come here to take up our time, perhaps looking for sympathy.

You are being quite rude by repeatedly coming here taking up the time of people who are dealing with the reality of a very difficult fatal disease.
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Old 02-24-2016, 05:46 PM #24 (permalink)
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Default Re: Gastroscope Detected Possible NeuroMuscular Condition

I understand several doctors have seen me. However any of the testing I received was never extensively thorough. I cannot help but notice physical changes happening. I am not trying to be disrespectful.

Today I went to see a neurological physiotherapist who only deals with neurological conditions. She did a very extensive test with me that lasted over an hour. She indicated that my left side showed weakness compared to my right. My balance was worse on my left. My tongue both the gap and how it slants at the back is not normal. She mentioned my smile is uneven. She also mentioned something about tone on my left arm. Also how my right eye was not connecting when she did these tests to follow her pen. She mentioned there is enough for a concern. Of course she cannot diagnose me but what I have been feeling has not been just in my head.

Sure I've seen 2 neurologists and they are experts in the field. Neither were neuromuscular specialists nor did they do nearly a quarter of the tests that were done today. My neurologist looked at my tongue 20 Steps away last time I saw him. I have health anxiety that is no surprise... However I am starting to feel as if everyone under my care as looked at that and not truly investigated further. I practically had to ask to be sent to an ALS clinic for further testing which is not till April 22nd.

I get it, you get a lot of people worried about this condition. I understand for those of you with the diagnosis how frustrating it can be when people like me come on here worried. I legitimately am concerned because what I am experiencing and I will spare you all the list of my symptoms is real. I feel at a dead end with all those whom have been under my care. No one knows your body better than yourself. So when I continue to see changea that are getting worse. Yes it becomes alarming. I guess all I can do it wait to see the specialist. Someone who knows the condition and sees it on a daily basis.
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Old 02-24-2016, 06:13 PM #25 (permalink)
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Default Re: Gastroscope Detected Possible NeuroMuscular Condition

That's great, you will see a neuromuscular specialist. We always advise that a general neuro is not what is needed.

It feels like a long way away, but when we were being diagnosed this was always the case - a new referral to a new speciality meant a couple of months of waiting again. In the meantime we kept note of anything happening and kept living as much as we could in every day. I hope you can now just do that - live as much as you can, and know that you will be seeing someone who can give you a definite answer.

I'm not saying I think you have ALS, I'm just saying that most of us went through a long process of tests, waiting and elimination until that diagnosis was achieved. This is a complex disease. It doesn't help that a lot of the system gets clogged up with people who have no real symptoms at all demanding appointments that should be given to people with genuine need. I'm not saying you are one of these, just commenting that it is a long road.
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