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Speechy8

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Hello all,

Looking for any advise as my anxiety around this issue has been getting out of control.

9 months ago I woke up to find a tremor of my left hand and weakness in gripping and writing. I went to my pcp and a neurologist which did an Mri of head/neck and emg of the left arm and hand. EmG only showed possible reinnervation and low amplitude of the right ulnar snap. Neurologist did a clinical exam and did see some weakness in my left hand as well as the tremor. The tremor then went away over the next several weeks.

Fast forward to about 3 weeks now the tremor has returned, i am having hand weakness seen while attempting to grip things, open things as well as forearm tingling and some weakness, i have been having muscle ‘jerks’ when at rest all over randomly. When I move the jerks go away. At night I can barely sleep bc of whole body jerks when I’m falling asleep. I also have a strange, tight sensation, continuous in my left calf as well. I have another appt with the neurologist but not for a while and was hoping to hear from someone as well. I attached the first emg as well.

Thank you in advance!
 

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affected

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If you are asking if this sounds at all like ALS, I'm so happy to tell you definitely not, not even a little bit.
If you have not returned to your doctor, please do so and discuss your concerns with a new clinical examination.
I wish you the best in getting this sorted with your doctor.
 

Speechy8

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Thank you for your reply.

I was reading through another post where the person had similar symptoms (“thought it was carpel tunnel, rest and splints seemed to help the weakness and about 9 months later she developed weakness in her same hand). She was then diagnosed after an abnormal emg. So it sounded similar to my current situation and got me worried.
 

Bestfriends14

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If you could reference the poster, perhaps we can elaborate what the outcome was. The tingling and jerks point away from ALS, fortunately.
 

Nikki J

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The difference between you and that person is that at the time they thought cts they had not had an emg. Once they had the emg it was clear they had something serious. They failed a hail Mary ivig trial and were diagnosed. Your emg does not look anything like what would have triggered that series of events. You are cherry picking
 

Speechy8

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Thank you for your reply. I will be following up with my pcp soon.

Are muscle twitches moving from one shoulder to the other and then to thigh and calfs seen in early ALS? Sporadically throughout the day.
 

Speechy8

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Hello again,

I finally had an emg of my upper and lower extremities that was marked as normal. Since them my left had tremor is on and off and I have developed twitches in my right upper bicep/shoulder and occasionally in my right thigh. My voice has been extra hoarse lately too. These twitches start on their own or I noticed that if I stretch they are activated in those areas. I read an article recently regarding a study where 2 patients received a clean EMG and then developed weakness and symptoms 18 months later to then have a repeat EMG that showed issues followed by an ALS diagnosis.

So my question is could this emg have been too early….could something have been missed or not tested? Any thoughts or suggestions welcome? I am waiting to have a follow up with my neurologist to discuss all the tests.

Thank you for your time!

I would like to also add that if I lift anything heavy (ex: carry a heavy grocery bag). I notice my left hand tremor more and my arms feel weaker for a while unless I rest them
 

Nikki J

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I believe the paper you mention ( not a controlled study but a case report) was 2 people who had emgs to explore other non ALS symptoms ( I believe back pain for at least one) who subsequently developed ALS. Why were the emgs normal? They didn’t have ALS yet. everyone has normal emgs before ALS starts. It is just that most people don’t get emgs.

if you have symptoms that are ALS it will show in emg and or clinical exam. Make a list of what you want to ask the doctor
 

Speechy8

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Yes that is the paper I read. Thank you for clarifying that.

Is any of the new symtoms I mentioned sounding like things seen in als?
 

affected

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Hi again
We have provided a thorough resource that took countless hours to create and it saves us from having to say these answers over and over. Please understand the terminally ill and those caring for them have limited time and resources.

Read it through slowly a couple of times to absorb the huge amount of information. It gives details on why the EMG was not done too early which should help alleviate your concerns. Please see your doctor for further follow up.
 

Speechy8

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I really appreciate you all taking the time to respond to my questions.
 

Speechy8

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I also followed up with my neurologist and she said she noticed some left leg and left hand weakness at the finger level during a repeat clinical exam as well as decreased timing on some vibrating toe test. She didnt really give me any other suggestions on what this could be but said that she doesnt suspect ALS bc it would be more generalized which seems to be contradictory to what I have been reading.

Do you all think I should get a second opinion?
 

affected

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Sure get a second opinion if you don't trust this doctor. You are always entitled to do that.
May I suggest you do not approach this new doctor asking if they think you have ALS. Just present your symptoms and ask them what they find on clinical exam so you don't muddy the waters by bringing up a rare terminal illness.
All the best. It's over and out for us here so far as talking this all over because continuing to come here and pursue this is not helpful for you at all.
I wish you a long and healthy life!
 
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