Old 09-18-2017, 08:01 PM #16 (permalink)
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Default Re: Worried

I had my appointment with the ALS clinic at UTSW, they did a complete work-up with me and informed me that I am very strong and that they see no sign of ALS, my atrophy in my neck was noted, but they reviewed the MRI and said that the muscles are equally strong, they tapped on all my muscles in arms, legs, back trying to get a reaction of a twitch and could not get anything to happen. The Dr. feels that I have BFS and that these are not related to ALS. She ordered a ton of blood work and an EMG. She said that she will only test 3 - 4 muscles in the EMG she said that if the results indicate the need for more, we can always add them. I asked her if she felt confident that I am clear and she said that yes she feels I should be good. I have scheduled an EMG for 10/2. I am excited to get this news but at the same time upon getting home and thinking through things I am wondering why order the EMG if you see nothing, I wish I had asked her that question, as I wonder if the weakness has yet to show up. I have a few other questions I wanted to pose to the forum and very much appreciate any feedback

1. Can atrophy every show up before weakness? I would think if a muscle is showing atrophy that there would be noted weakness?


2. In bulbar onset is their usually an increase in saliva noted as a symptom or is a dry throat more the norm


Thank you everyone in advance for your responses and support!
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Old 09-19-2017, 01:57 PM #17 (permalink)
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Default question

All,

The clinic called today and they want to add a swallow test along with the EMG? I asked if they were concerned with my swallowing being stronger on the left and she said no that this was standard and wanted to schedule it. I am now concerned. I apologize for not reading stickies in the past and had a few questions regarding bulbar early onset.

Has anyone had swallowing get worse on one side before becoming an issue or does it progress all a once? I can swallow but it seems weaker on the left that the right, my ears pressurize stronger to the right as well when I swallow.

Nikki or anyone, I would greatly appreciate your input, thank you!
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Old 09-20-2017, 07:48 PM #18 (permalink)
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Default Feedback appreciated

Today I was having a great day, not even thinking about als, then suddenly I felt extreme fatigue and my right arm began twitching and the entire arm felt tight, thr tightness has continued for few hours, I then was walking through the airport and my right shin was sore & causing me to walk funny, no apparent weakness other than tight muscles. I have experienced pain somewhat with both my arm and leg, does this sound like onset?

I am have done nothing to create sore muscles in either my R arm or leg. My twitching has been primarily right sided with some on the left. Does this sound like a precursor to weakness in als.

Please let me know, I have not had any responses of late and if I am doing something wrong in my questions please let me know, I would appreciate feedback regarding this today as it has me very concerned

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Old 09-20-2017, 08:17 PM #19 (permalink)
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Default Re: Worried

Mike, I think the issue is the folks here have been unable to reassure you. And the ALS clinic has been unable to reassure you. This is not a place to continue visiting after you have been cleared of ALS, as it only feeds more anxiety.

Now, no one is dismissing your concerns- it's just there is nothing here, on this particular forum, for you. These are questions to ask your doctor. Continuing to stay on an ALS forum after being told by a neurologist that you don't show a pattern of ALS symptoms is pretty unhealthy. It's clear the folks here are also unable to provide the reassurance you need. People continuing to answer your questions about if you have ALS is also unhealthy, as you are not able to take the advice and reassurance provided. Please continue working with your doctor to track down the reason for your symptoms. Do not focus on ALS, as it's likely you are clouding the issue to focus on a terminal disease.
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Old 09-20-2017, 08:55 PM #20 (permalink)
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Default Re: Worried

Thank you SK, I am simply scared and while I take great comfort in what the Dr told me the other day, the symptoms today have me concerned that my weakness is not yet evident and forth coming, you all provide s great level of comfort to many of us in sharing your experiences abd the last thing I want to do is wear out my welcome, I am just trying to understand if these tight muscles should be of concern as they are out of the norm for me.....

I read that first come twitches then weakness and then also see where people have said weakness must come first and then twitches, just trying to get sone clarity to what I have experienced today while working and a good non als mindset, the symptoms pulled my back into being fearful

Thank you
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Old 09-20-2017, 10:09 PM #21 (permalink)
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Default Re: Worried

Mike, it really does appear that you are not able to let it go. This really isn't a place for health anxiety or an appropriate place to ask what your symptoms might mean. The people here know ALS. If you have been assured "no ALS" both here at by a specialist, there is NO reason to continue posting your symptoms here. If you want to know about tight muscles, see a physiotherapist.

Please understand you are asking people who have a terminal disease, or are caring for someone with a terminal disease, to continuously reassure you. It is no longer appropriate to be here. You are feeding your anxiety about ALS and not pursuing wellness and appropriate medical attention.
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Old 10-11-2017, 10:53 PM #22 (permalink)
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Default Re: Worried

I had my EMG on yesterday and the Neuro said he did not see any signs of LMN. They tested my right side,as most of my twitching was on that side, 5 muscles and my back. One question, today as I was working I noticed that my left hand the area between my thumb and index finger is not as plump as my right hand, nor is the thumb pad area of my palm. I am right handed, but I would think both hands would be similar in size. I have never compared them before. My question is, the neuro tested that muscle in my right hand and it was clear, would that also mean my left hand should be clear being that those nerves originate from the same place in my brain/spine? I did not see this in the stickys, thanks.
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Old 10-11-2017, 11:15 PM #23 (permalink)
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Default Re: Worried

Bodies are asymmetrical. It does not signify anything unless you track changes over months and see a reduction.

Please understand this is not the place for you. If you have any further questions about what your symptoms might be, or about your observations about your body, you must work with your doctor. The people here have given you a whole bunch of reassurance and you are having a hard time accepting it. Your doctor/s have also assured you and you have not accepted it. It's clear you are not convinced and require assurance- however there's nothing we can do here for you.
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Old 10-12-2017, 01:01 AM #24 (permalink)
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Default Re: Worried

Shiftkicker,

I stopped posting as suggested until I received my EMG and wanted to ask the forum if testing my right hand and it being clear should mean that my left had should be clear? Left H is smaller as noticed by my wife, in the thenar area on the top of my left hand, right is much thicker. Left is flat, there is muscle there just not as thick as right. Please let me know your thoughts on the EMG testing of one side clearing the other.

Thank you
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Old 10-12-2017, 01:15 AM #25 (permalink)
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Default Re: Worried

Again, the answer in in my previous reply- asymmetry is normal. Your neuro is the person to ask about their choice to test only one side. Obviously they felt no need to. They are the expert. If they chose not to test the other side, it's because they didn't see the need. Therefore it is clear.
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Old 10-13-2017, 07:21 AM #26 (permalink)
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Default Re: Worried

You are correct, everyone has reassured me including my Dr., I have a clean EMG that tested R arm, R leg, one muscle in left leg & thoracic, no sign of active denervation, but this thenar symptom has me concerned...

I made an appointment with the neuro muscular specialist but must wait 2 weeks, my concern is the difference in my thenar area of my non dominant hand which I had not noticed before, has an indention closer to the index finger tapering towards the thumb, with a dimple towards my wrist, there is still muscle there, just not as big as dom hand, no weakness noted, I have read that weakness in most cases proceeds atrophy, I have read that if atrophy is present due to MND that it should show on an EMG, I sent the Dr. an email asking if the right side was tested, would that clear the left being that those muscles originate from the same region & they are saying they will see me in clinic, I am thankful for you all being here & answering all of the concerns of people like me, many of which do not have ALS, but this symptom concerns me as it is very much noted in ALS, one question I have is how much atrophy needs to be present before weakness is realized, any thoughts on my EMG, this will be my last post on this, any feedback is very much appreciated
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