Old 09-12-2017, 12:36 AM #1 (permalink)
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Default Worried

I have been trying to figure out what has been going on with me for 3 months. Today while eating a Big Mac I noticed that my food was going down the right side of my throat more so than the left.... When I got home I looked in the mirror and it is obvious that my tounge is lazy to the left and the side of my throat to the left seems heavy or swollen. I have had twitching, nerve pain, fasciltations been to a number of Dr's and was finally referred to UT Southwestern and will be calling them tomorrow for an earlier appointment. I have 3 kids and a wonderful wife and I am worried, all I want in life is to be here for them, If anyone can please tell me

1. if your situation, initial onset is/was similar to what I have listed above

2. Where did you progress and how fast did it progress?


Much thanks, I head to UT Southwestern next week, hoping for something other than what I fear is coming. Than you all for welcoming me to your site.
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Old 09-12-2017, 12:52 AM #2 (permalink)
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Mod note: Moved to the DIHALS section.
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Old 09-12-2017, 01:49 AM #3 (permalink)
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Default Re: Worried

Mike, there are many things this could be, and not all your symptoms are necessarily related. ALS is low on the list.

There is no sense in speculating on this. You might read the sticky on getting a second opinion and make sure all your records are together for UTSW.

Best,
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Old 09-12-2017, 03:54 PM #4 (permalink)
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Default Heartbroken

I have an appointment Monday at UT Southwestern here in Dallas, I have difficulty swallowing, twitches and today my abdominal muscles feel like I am being stabbed, I have gone 4 months trying to get answers and I anticipate learning that I have ALS on Monday. The hardest thing for me to deal with is the impact this is going to have on my 3 kids and my incredible wife, I have 2 kids in college and a daughter 14 here at home, I do not want to leave them, especially my little girl, I am so sorry that they have to witness me go down this path. Any advice for dealing with kids and a loving wife is greatly appreciated.
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Old 09-12-2017, 04:03 PM #5 (permalink)
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Default Re: Worried

Please stick to one thread in this subforum unless you DO receive a diagnosis. We understand you are scared but as Laurie says there are other things this could be. Have you had mris and and an emg? What did they show?
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Old 09-12-2017, 04:12 PM #6 (permalink)
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Default Re: Worried

I have many other symptoms and I understand what you are saying, yes I have EMG and it shows denerving, when I swallong everything goes to the right down my throat, my legs are weaker, arms are hurting and I am twitching all over, I am hyper reflexive and I have been for 6 years, I have trouble breathing laying down flat, I am so very scared, I have had 2 back surgeries in the last 12 years and many CAT scan and xrays, frustrated that this may be the root cause of all of this,I hope to god this is not ALS, and I will wait until Monday and see what they come back with, I am sorry Nikki, just very sad and scared for my kids
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Old 09-12-2017, 04:23 PM #7 (permalink)
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Default Re: Worried

Please feel free to post on this thread if you have questions or think we can help. Did your emg show acute and chronic? What did your neuro say? Of course you are worried and concerned for your family
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Old 09-13-2017, 10:05 AM #8 (permalink)
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Default Advice

Hello all and bless you for making this site available. I have an upcoming appointment, seems like anytime you want to see a Dr. you must wait forever, but the wait is here. I have had pains on and off for 5 months, I have had twitching that also began but is really everywhere. I first noticed it in my right hand and arm. I have had 2 major back surgeries and honestly have twitched ever since those surgeries. In addition my neck has been very stiff, especially on the left side and my shoulder muscles when looking straight into the mirror, are not symmetrical with the right being smaller and lower, I have also noticed that when I swallow food it tends to push to the right side of my throat and not the midldle, which I noticed about 5 months ago, I have no limb weakness, I have no slurred speech, I can move my tounge in every direction and it is strong. I am hyperreflexive, but I have been hyper everywhere for at least 6 years. In ALS does the hyperreflexation come on as a new thing once the process starts or is it something people have always had? My neck, my swallowing & my twitches have me concerned. I had a full blown EMG 6 years ago and it came back abnormal due to a nerve in my left leg not cooperating, they noted it was more than likely due to surgery. The arms and legs signals all came back normal, with the exception of the one spot. I am sure you are asked this ll the time but do these symptioms mimic what you all have seen ALS do? I realize it is different with everyone, just looking for any feedback and again thank you for being here and bless you all.
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Old 09-13-2017, 10:10 AM #9 (permalink)
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Default Re: Worried

Please. I asked you before to stick to one thread. It is much easier for PALS to see everything together. Please read the read before posting sticky the guidelines are there. We know you are scared and as I said before you are welcome to post but we need you to follow the rules
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Old 09-13-2017, 12:01 PM #10 (permalink)
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Default Re: Worried

Twitches are meaningless without weakness. Pain is considered to point away from ALS as it is not a presenting symptom. Generalized hyperreflexia is common and usually normal. In ALS it appears as a new finding and starts as weakness does in one affected area and spreads with the disease. A stiff neck also does not sound like ALS.

I don't know what to make of your swallowing but is not something my relatives with bulbar involvement mentioned. If you have not had an EMG that is current I think you are getting ahead of yourself to " anticipate learning I have ALS" at your appointment. It sounds like there is testing that needs to be done and you would do well to step back and concentrate on preparing for your appointment with an open mind. The best advice we can give is ask what is wrong with me? Don't try to focus the doctor on ALS when it may be something utterly different

Good luck. Let us know what the doctor says
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Old 09-13-2017, 05:55 PM #11 (permalink)
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Default Re: Worried

Nikki, I cannot thank you for your advice. I saw a PMR physician today and she noticed that the muscle in my neck on the left is not symmetrical with the left, it seems to be the Sternocleiomastoid muscle, she ordered an MRI to see what is going on here, I asked her about ALS, and she seemed surprised and said, get that out of your head, lets see what the MRI says. It is obvious that the muscle is atrophied and that scares me. She tested my strength and it was strong, so no weakness as of yet. I have been watching my swallowing and it appears I can swallow on the left but it does push right, my tounge seems strong and I can say tounge twisters with no problem, I am still having fascilitations all over, primarily in my right buttock and right arm. I am most concerned about the atrophied muscle, as I know that is not a good sign, I do not seem to have lost strength but maybe its just not atrophied enough. Please if anyone has any thoughts on these symptoms and if they sound in line with ALS please let me know. I have my appointment early next week, thank you in advance for your responses.

Last question, would have my EMG 6 years ago picked up anything? Or had the disease process has not yet started, so therefore no sign?
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Old 09-13-2017, 09:57 PM #12 (permalink)
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Default Re: Worried

So the doc told you to not worry about ALS, to wait for test results and she was following up with an appointment next week. There is nothing else we can add, really. Your symptoms do not sound like ALS and the doc didn't think so either. You don't have weakness. Atrophy in ALS does not cause weakness, it is the RESULT of weakness. It sounds like you've got something else going on. Good luck and post AFTER you see your doc next week.
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Old 09-14-2017, 03:13 PM #13 (permalink)
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Default Re: Worried

Nikki and Tracy,

I know you asked me to wait till after I see the Dr. before I post again, I have read the stickys and have a few questions I was hoping you would answer to prepare me for my visit:

I have definite muscle atrophy on the side of my neck, yet I can move my neck with no problem. I do feel a little more pressure on that side but it is strong. You all said atrophy comes after weakness, when the muscle stops working does it gradually die or all at once its gone? If it is gradually then could whats remaining of my muscle still have strength or once atrophied, it is on no use?

I am having fascilations everywhere, mainly arms and legs, but no "clinical weakness" from what that means, with no CW are these fasciltations ALS related?

I am extremely tired and this everything has hit me as of last Friday and seems to have gotten worse each day. It feels like someone has put a hose in the center of my chest and is sucking all the air out, is this the norm for ALS, or more anxiety/stress in your opinion

Last, obviously initial symptoms are not always recognized but once past that stage does the body, in a progressive fashion attack one muscle at a time or is it an all out attack on your entire muscle system, to me I feel like an attack of everything.

Thank you and bless you both, please have patience with me and thank you!
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Old 09-14-2017, 03:28 PM #14 (permalink)
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Default Re: Worried

Did the doctor say definite atrophy or asymmetry? Not all asymmetry is atrophy and definitely not all atrophy is ALS. My atrophy came significantly after first weakness when I had lost several muscles. No way was the weakness not obvious by then.

Most twitches are benign and have nothing to do with ALS

Your description of fatigue without weakness does not sound like ALS stress and anxiety? Maybe. People with bfs report fatigue often.

ALS starts in one area and spreads. By the time symptoms are all over the PALS is significantly disabled if not paralyzed

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Old 09-14-2017, 05:50 PM #15 (permalink)
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Default Re: Worried

On the MRI order it said atrophy, I can turn my head side to side equally against resistance, when I bend it up and down I do get slight pain when all the way down or back on that side, but it goes away and I can continue to move with no pain. I have had no symptoms of neck pain, I simply noticed it in the mirror.

I am concerned though as atrophy is an early sign, just confused as to why I do not have more weakness, the atrophy is obvious to see. I am scared as I have no explanation of this muscle disappearing, hoping there is another condition that is causing this, love my family so...

Thanks,
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