Concerned about ALS

Imik

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Hello, In august of 2019 I started having stiffness/tightness of my left leg. Since then it has spread to both legs, arms, chest and face. June 2020 started having muscle twitching that started in left leg and then quickly moved to multiple areas of my body. Weakness of arms and legs started about a month after twitching started. Used to be very active but now have worsening stiffness and twitching after exercise so can not do many of the things I used to. Have a physiologic tremor that started left foot in June 2019 and has spread to other leg and both hands. Physiologic tremor dx by 2 movement specialists. I also have shaking or internal tremor of legs, arms and face. This makes it difficult to sleep at night. Have a burning neuropathic pain at lower back and buttocks. Constant clearing of my throat. Normal exam by ENT.
Over the last month have post void urinary dribbling. Have pending appt with urologist.
2 EMGs. Last one in October showed findings that can be seen in MND. I can post Summary of findings. Last EMG done at local health system by neuromuscular neurologist. Saw Neuromuscular specialist at University hospital a couple of weeks ago for telemed visit. She said that chance of MND about 10% as she would expect more progression in over a year. Have follow up EMG and visit with her in mid March. Wondering if I should try for earlier appt at another ALS center. Any advice feedback is much appreciated. Thank you for having this forum.
 

ShiftKicker

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Hello there-

Sorry you find yourself here. Posting your emg report/summary with all identifying info obscured would definitely be helpful. It would definitely provide some extra details for some of the more experienced members here.

In the meantime, make sure to read the link: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms for some really helpful info. There are a few conditions listed there that are mimics or share some similarities/symptoms w MND.

It may be a bit of a quiet night, given the date, but I am sure folks will weigh in, particularly once your emg info is added here as well.

Take care
 

lgelb

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Without having seen your EMG, urologic symptoms such as you report, depending on the clinical findings, are a possible indication for an MRI of the brain to rule out MS, or of the spine to rule out damage there that could be affecting your bladder.

Best,
Laurie
 

Imik

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I’ve attached the second page of my first EMG on Jul 9.
The second was was done on October 22. It’s two pages.

Thank you, MRI’s of brain and spinal cord in early July were normal. Blood tests were normal too. After the twitching started in July symptoms seemed to spread and worsen much faster then previous. I’m also getting short of breath with minimal exertion.

Hello, Thank you for the information. I’m under the care of general neurology but so far it’s been wait and see as symptoms progress. I have follow up with Neuro in mid January and follow up with neuromuscular neuro in mid March. Neither of them have been able to give me a diagnosis.
 

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lgelb

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The report says it all -- no evidence of motor neuron disease, but a possible radiculopathy (mild spine damage) that may merit further testing. The further testing would be with the aim of localizing the diagnosis to facilitate physical therapy or other treatment. Sounds like you have a plan in place to follow up with the neuro mid-month, so from our standpoint, you're good to go as regards ALS.
 

Imik

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First of all, thank for taking the time to reply. After I did the 2nd EMG I asked the neuro about it and specifically asked if the findings could be seen in ALS. He said yes they could but could also be seen in radiculopathy. I’m a family doc and see radiculopathy. But I only see it in a limb or two. My issues started in left leg but now are affecting all four extremities as well as face neck and torso. I also had no significant findings on MRI of spine.
 

lgelb

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You're right -- radiculopathy is not a "whole body" phenomenon and your EMG says as much. But think of how common it is to have radiculopathy + referred pain/twitching (which, as you know, is exacerbated by hypervigilance). And as we age, urologic issues become more common as well. Not everything can be shoehorned into a single clinical pattern.

To say something "could be seen" in ALS as well as radiculopathy is basically a tautology. I would not let it guide your thinking, and of course, none of us is fully objective about our own health.
 
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Imik

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0CD3F800-067F-4B02-82A6-3E6EAB51A076.jpeg


does anyone else have any input on my second EMG? I posted the above photo of EMG findings in ALS. This is from up UPtoDate.
I have some of the findings in the extremities that were tested. My left arm and left leg. And MRI’s is spine are normal.
 

lgelb

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If you have a medical degree, I know you are aware that an abnormal EMG and/or negative MRI does not equal ALS. The NUTD excerpt says nothing to contradict the findings of your EMG of a localized radiculopathy.

It might be time for counseling to get past this fear, in concert with advanced imaging and/or PT eval to better characterize/address the radiculopathy or especially any potential compression.
 
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