Looking for advice. Does this sound like ALS? Opinion pls.

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chukarb

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Symptoms are progressing and I am worried about ALS. 49 year old male. Looking for advice. Symptoms started about in Nov. 2019: glutes ached all the time, difficult time sitting for extended periods of time. Right inner groin and right inguinal area ached intermittently. Visited urologist, CT of pelvis was normal. Referred me to PT. Performed PT and yoga for 4 months with minimal improvement before COVID happened.

Was referred to a Neurosurgeon by my PCP for the inner groin discomfort/aches (not sure why my PCP referred me to a neurosurgeon). Physical exam with Neurosurgeon in August 2020 was normal. Neurosurgeon referred me to a sports medicine clinic. October 2020 noticed muscle tightening (primarily in my legs/hips), especially at night. Performed PT w/ sports clinic from Oct-Dec. 2020 with some stabilization in the pelvis but no real improvement.

Blood tests each year (all within normal range). Noticed right foot weakness in Jan. 2021. Noticed right inner groin ache and discomfort extended into hamstring area and calves. Another CT of pelvis and chest in Feb. 2021 was unremarkable. March 2021 right hemibody aching, right face ached, and right frontal node ached. Brain MRI in March 2021 was unremarkable.

Finally received a referral to a Neurologist in April 2021. Neurological exam was unremarkable (thought it was a generalized anxiety disorder). We discussed NCS/EMG and MRI of cervical spine. NCS/EMG in May 2021 came back normal (needle/EMG tests were on right side in various locations, upper and lower extremities). MRI of cervical spine didn't show anything significant. Since May EMG, noticed additional symptoms, including muscle twitches/fasics in both legs, and additional weakness and aches in arms (near biceps and right forearm), left inner groin aches. Noticed muscle atrophy in my arms recently (skin wrinkles and loss of muscle mass).

Discussed performing another NCS/EMG w/ the neurologist on the phone and he recommended waiting a minimum of 6 months. Neurologist thought I may have a Functional Neurological Disorder (FND), referred me another PT and physiatrist. Wondering if I shouldn't get a second opinion from another Neurologist?
 
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lgelb

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I would see what you can get from the PT/physiatrist before checking in with another neuro. With the negative tests you report, those specialties seem more on point, despite the limited improvement you have seen with PT.

I see no reason for you to be concerned with ALS.

Best,
Laurie
 

chukarb

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What symptoms am I presenting indicate I should not be concerned about ALS?
 

Bestfriends14

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Hi there,

None of your symptoms point to ALS given that you have had no function of failure and none of your symptoms, since 2019, have progressed past "achey". Achey is not indicative of ALS, but a progressive inability to do tasks you once could do is. Have you read the "Important, please read before posting" stick at the top of the subforum? In that sticky, you will find further information as to why your symptoms do not point to ALS.

Please keep working with your docs and take good care.
 

affected

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If you read here, you will see why you are not describing anything that would ring ALS alarm bells. I hope this helps you stay calm and work with your doctors.
 

chukarb

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Forum Supporters/Guros - Attached is my EMG from 05/12 (I erased the personal information on it). Is this a typical EMG report? I expected more information on the report.
 

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Nikki J

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Well there is usually a summary paragraph but the tables look usual and your emg is clearly normal as you were told by your doctor and that is what the summary would say
 

jonico

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Chukarb, "Forum supporters/guros", seriously? You're talking to one person who has ALS, two people who have lost spouses to ALS, and one person who is caring for someone with ALS. If you expected more information, ask your neurologist if yours is a typical EMS report for crying out loud.
 
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chukarb

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Jonico et al - My apologies for the poor choice of words, I noticed those titles under the folks that replied to my original thread. Again, poor choice/decision.

Best regards.
 
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