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ALS Symptoms - worried

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Hnoshad

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Hi, I am new to this forum. I’m going to try keeping this short. I am 29 years old and since the beginning of August I’ve been experiencing weakness/tightness in my right leg. It was mild then, but has gotten worse over the couple months. Sometimes I want to pull my leg because of weird sensations. I’ve also had twitching all over my body and random tightness in areas of my face (but not too often). More recently my pointer fingers in both hands start getting a numb feeling without actually going numb (I realize that numbness is not part of ALS). I have a hard time walking without shoes. It feels kind of like a stumbly walk. My neuro, who is not specialized in ALS did a strength test and an EMG last month and both were fine. The EMG looked at both legs. However, during the exam the machine started making a lot of noise and the doctor moved the needle and it was fine. Also, looking at the numbers there’s a significant difference between my left and right leg. I’m posting my results at the bottom. Thank you in advance and any advice is helpful!
 
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ShiftKicker

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Hi there-

The shots you posted contain identifying information. I have removed to protect your privacy. Can you please re-upload with name/dob, etc obscured please?


Thanks so much!
 

Nikki J

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The report is actually of two tests the one with the numbers is the nerve conduction study. I couldn’t see the numbers but some variation is normal but as far as ALS goes the nerve conduction study doesn’t matter anyway. What matters is the actual EMG which is at the bottom with all the Ns for normal and a few 0s also normal. Utterly normal emg! The noise matters not at all. You are good to go from the point of ALS. Return to your doctor with an open mind to say what is wrong but forget about ALS
 

Hnoshad

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Thank you so much for your response. I saw a new neurologist to see what it could be. He ordered an MRI which came back fine so the doctor told me it was not MS either. He said in two months he wants to do his own EMG. I hope that’s not because he thinks that this one was inaccurate.
 

Hnoshad

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I have a question about swallowing. I mentioned my right leg has been feeling weak and I’ve been twitching around my body and rarely the face. However, since yesterday I’ve noticed I have a need to swallow even though I am not eating anything. It feels like there’s something in my throat/or it’s a little numb. What is the likelihood of going from having leg weakness to throat swallowing issues?
 

Hnoshad

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Hi, sorry to bother but I am getting really worried. I made an appointment with an ALS specialist but it is not until Dec 18th. My right leg is getting worse! All day I’ve had a hard time walking on it. I had to keep sitting down because it felt uncoordinated and just weak. This all started in Aug but has definitely gotten worse. Also, my right hand and arm have been feeling week with some upper hand cramping. I have a hard time describing the weakness in my leg and now arm. It is sort of a tingling weird sensation (not numbness or pins and needles). I keep asking my husband to put pressure on my leg to make my leg feel better, but it never truly goes away. I have two questions: 1. In ALS would I be able to feel such a sensation? 2. Would my leg become totally useless before the weakness travels to another limb? I am trying hard to think what else it could be since I had a clear MRI and a clean initial EMG. I’m just not sure if I trust the EMG since that doctor does not have any experience with ALS. I keep reading that the EMG is only as good as the person performing it.
 

Nikki J

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To answer your questions 1there is usually no feeling associated with ALS onset 2 no not usually. I have some involvement of all extremities but no complete paralysis yet.

To comment there are many many diseases that cause neurological symptoms and a lot that will show on neither MRI or EMG. It is not your job to figure this out but I am responding to comment about thinking what else it could be.
 

Hnoshad

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I am so sorry to be responding again, but I just keep getting new symptoms. My leg which started in August is feeling so much weaker. I need to wear shoes all the time to give stability or walking just doesn’t seem right. Last week my throat started feeling tight like something is stuck there. This doesn’t happen all the time, just randomly one day and then a few days later. What is REALLY concerning me now is that along with my right leg and throat, my right arm and hand now have symptoms. For two days my right arm feels heavy and sore. Everything that’s been happening is on my right side of the body and I’ve read ALS usually starts on one side. I made an appointment at an ALS clinic in D.C. for Dec. 18th but it just seems so far away.
 

ShiftKicker

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Hnoshad, there's really nothing the folk here can do for you. This is a forum for people with ALS and their caregivers, not a diagnostic resource or health anxiety forum. While we do wish to help, this is not the place to continue listing symptoms or receiving health advice. Your appointment is 4 weeks away. While that may seem like forever to you, it is not long at all.

Continuing to remain here and posting your symptoms looking for answers the people here can not give you only serves to increase your anxiety and causes folk to think you are not able to listen to them when they've already said they don't see ALS. If the stress of waiting for answers is interfering with your daily activities, you might wish to speak with your doctor about finding some solutions to help you manage while you wait. Unfortunately, the people here can't be used as this type of resource.

Please understand it's not that folk here don't want to help, but there is absolutely nothing we can do- and are not qualified to provide support for those anxious about their health.
 

Hnoshad

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Good Evening everyone,

I told myself I would not respond until I had my appointment with the ALS specialist, but I am now more worried than ever. I started physical therapy and my therapist noticed muscle atrophy on right thigh above my knee. I have been working on excerices to make the right leg stronger, but now the atrophy is really concerning. I can still do everything like walk on my toes, climb stairs, and the exercises my PT tells me to do. She told me that atrophy might have occurred because I might be favoring my left side, but I don’t think I am. I have no pain so I’ve been using both legs. I’m just really scared about the atrophy.
 

ShiftKicker

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Please make sure to keep a list of your symptoms and concerns for your doctors for your next visit. The folks on this forum can do nothing about your symptoms and can't be used as a general medical or anxiety support resource.

Please revisit the post https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html and read all the way to the end about symptoms, procedures and what to do once you have been answered by the members here. It is not because people don't want to help you, but there is simply nothing people can do here for you aside the information and responses already provided you. What you have posted is information to keep for your doctor as they are the person to examine you and provide information about their observations.
 

Hnoshad

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Good Morning,
This morning I had an appointment with the rheumatologist because I have been trying to figure out what is wrong with me after having a clean initial EMG. I was hoping she would say it is a joint issue and not muscle but she told me to go back to the neurologist. She noticed the atrophy in my leg but said my strength is fine. She also said I have hyporeflexia in my problem leg when she tested my knee.

Should I be worried about this?
 
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