I think I might have ALS, if I have these symptoms and an EMG is normal does this rule out ALS.

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davidshadwell

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MY name is David I'm 34 years old. I'm wanting to know if anyone has experienced a lot of these symptoms and if they have had a problem attaining a diagnosis.
Since I was 11 I played guitar for 3 hours a day until the age of 32. My left hand became stiff, I couldn't play certain cords anymore. I had to use more strength on the strings of the guitar, so it would play a cord. I went from playing from 30 minutes,to 15 minutes, to 5 minutes. 1 year ago I was lifting weights for 6 months, I gained muscle and was able to lift 20LBS with bicep curls. Two weeks later, I could only lift 17LBS. The next week it went down to 15LBS, a week after it was 12LBS.

6 months ago, I started having muscle cramps in my left foot once a month while I was sitting down.6 months ago, I've been choking on green peas, rice, and saliva. One month ago, I've been stumbling, almost falling, especially going upstairs, which I refuse to do anymore. I cant lift my arms above my head, can't lift my left foot. One month ago, I've been dropping objects like car keys, papers, my phone, my cigarette vape, and dishes. It's happening from weakness, not tremors. lately, in the past week I have difficulty buttoning my shirt.

The doctors have found I have weakness in both of my hands. They found I have an abnormal gait with dragging my left foot. Hyperreflexia in both of my knees, both of my ankles, and the babinski sign in both feet. The doctors found that I have muscle wasting in my left calf, left hand in between my index finger and thumb. They found I have an inability to contract the muscles on the left side of my neck. They found that I have ulnar claws in both of my hands. They found that I have tongue fasciculations in my tongue. All of my labs are normal.

My mri of my brain and spine is normal. I don't have dizziness, problems with vision, nor memory. I don't have pain, tingling, or numbness. I don't have any fatigue. Has anyone experienced a lot of these symptoms? If an EMG comes out normal does that mean that there's an enormous chance that I don't have ALS?
 
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You have yet to have an emg? Clearly something is significantly wrong and with the severity of your symptoms it should show very easily on emg is it is ALS. You do have upper motor neurons findings and umn disease can cause weakness too though significant weakness and atrophy is usually lmn in mnd. I understand you are looking for hope. If your emg is normal I expect the doctor would want to explore other options. Do let us know
 
i have an update from my emg of my left arm and left leg, the emg is normal. however, the dr who conducted the emg said that most of the symptoms i listed have just started and its to early to tell exactly what is going on. another thing he mentioned is that Hes not sure the fact that i had to stop playing guitar has anything to do with anything neurological.

i have scheduled an appointment with an ALS specialist. one thing that i want to mention to you, is that i take valium and after taking it. my hands are less stiff and also the soreness in my throat lessens. also, yawning exercises helps my throat, it feels like its opening up some kind of tube. another thing i noticed is that my voice has changed. I made a new recording of me saying the exact same sentence that i said back in june 2022. my voice is clearly deeper, i have asked all of my friend's, whom have confirmed its much deeper, so i know its not my imagination. also, on one of the recording I'm taking brief pauses where it sounds like im briefly sucking in air. my friend who is blind and my mom have noticed that I'm starting to slur words occasionally, a lisp, and a studder.my mom has confirmed this is recent and that ive never had any of these problems.

im also have a swallowing test that is coming up. have you known valium to help people who have been diagnosed with als? have you known anyone who's had a normal emg and they go back a year later and there's abnormalities? is it normal to visibly be able to see tendons, not in the back of the hand, but in the palm of your hand? if you have any more questions please feel free to ask and i just want to say it means a lot that you have taken your time out to answer my questions.
 
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Hi David. Did you just recently have the EMG, or you had it a year ago, I'm a little confused by what you wrote so want to be sure before I try to respond ot any of the rest.
Valium does not help ALS but it is a muscle relaxant and relieves anxiety so I'm not surprised you notice the things you do. It does not help motor neurones to work however so PALS do not ever get prescribed it.
 
i just recently had the emg, it was done on november 29th and most of my symptoms started late october of this year.
 
There are people who start with upper motor neuron disease whose emgs are initially normal because their lower motor neurons aren’t affected yet. This really doesn’t sound like you because even though you said you have umn signs you also have atrophy and weakness which are lmn when seen in ALS. As I said before with the symptoms you described the emg should have shown if it were ALS. Your symptoms are worrying though

It is good that you are getting another opinion - they may want their own emg. It isn’t unusual for an ALS specialist if they don’t know the initial examiner well.
 
Thanks for clarifying.
Please do let us know the results of this next opinion.
It's good that this will be with an ALS specialist so you can rule this path in or out at this point.
 
I have an update, I have failed the swallow test on multiple levels. after doing a thorough examination they found that the muscles on the left side of my throat aren't working and there's another part inside of my throat that isn't opening all the way. She noticed that I have tongue fasciculations and weakness on the left side of my tongue, and very minor wasting on the left side. The muscles in my face aren't chewing properly. The speech pathologists told me I'm having problems annunciating long words. Further more, she told me that the muscles aren't activating, because of my nerves. She said that she believes this is a multifaceted problem and to discuss this with the ALS specialist that I'll see on 12-20-22. At this point I'm very scared of what is going on with everything with my body. What do you guys think about this?
 
I'm sorry this is what has been told to you.
Discuss this carefully when you see the ALS specialist in just a few more days time.
That examination and discussion is going to tell you the most. We can't see you, see tests or hear you, so that appointment is going to be the best next step.
 
Today I saw an ALS specialist, she graduated from Harvard, and she spent two hours with me. after showing her my medical history, info from what other doctors have found, and her clinical exam. she told me that she is concerned that I have ALS. she's going to be doing a lumbar puncture, another EMG, lots of labs have been ordered, an entire MRI of my spine has been ordered. I'm starting to go into depression and denial. I don't know if I'm strong enough to face this, it feels hopeless. I want to know if it becomes confirmed that I have ALS will Medicaid cover the entire cost of home healthcare providers? how long will it take to get on disability? does anyone know of good clinical trials or good medicine?
 
I'm sorry to hear this. Try not to jump forward too far too quickly.
There are some clinical trials happening for sure.
Others can talk further (I'm in Australia) about the best insurance options for covering stuff if you receive a diagnosis.
It is a shock, but you know that the people you are talking to here are already dealing with it, and helping others at the same time. So that gives you some hope to start.
I hope they get things moving fast for you now.
 
For insurance you are indeed jumping ahead but if you have enough current work credits and have stopped work ALS qualifies you for ssdi and medicare. Medicare does not pay for custodial home care. If you qualify for medicaid in your state ( which is income based) they may cover some. It is state dependent

there are more trials than ever. If you do get diagnosed that would be something to discuss with your neurologist
 
I want to give a little context with everything. When I asked the doctor what happens, if every test like blood draws, new EMG, and MRI come out normal then what. she said then we are still looking at ALS, she pointed out the umn from hyperreflexia and lmn from muscle wasting. all I can tell you, is that my body is actually giving out, I sadly need a disability. further more, I've been living in a loveless relationship with my wife, she makes me feel lonely. we have nothing in common, Shes not my type, I feel like an idiot. she calls me words like I'm a cripple, she throws things at me. If I truly have ALS then I want to go out and have fun before its too late. I'm sorry if this sounds wrong of me, but this is how I've felt for five years now. What are your guys opinions and please don't judge me.
 
If you have a diagnosis with the code attached for ALS then you can start on a couple of medications and talk about the available trials.
Have you been given this and started on at least Riluzole?
 
This has been a big rollercoaster of emotions. My doctor has ordered all different blood tests for things like Mg, stiff person syndrome, HIV, heavy metal poisoning. Every last test they did has come back normal. the doctor even ordered a full MRI of my entire spine, everything's normal. The ALS specialist has uncovered that I have fasciculations on the new EMG that she performed today. After the EMG, she got quiet, she was nervous, and she didn't tell me the results, but i read her EMG report. For additional clinical findings please read the previous posts. This isn't good at all is it?
 
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