Newly Diagnosed

Snowbird270

New member
Joined
Apr 18, 2020
Messages
7
Reason
PALS
Diagnosis
02/2020
Country
CA
City
Delta
Hi, it’s been a hard 1 1/2 years. I was originally dx. With ALS Limb onset Feb 2020. I had right foot drop for about six months. NCS and EMG abnormal. All blood work and MRI’s done prior dx. (Slowed no cause of foot drop). I than found a neurosurgeon, whom did lumbar surgery on me six month later. Found significant L4-5 stenosis and L5-S1 right nerve room almost 100%compressed and left nerve root severely compressed. Two months after surgery I developed foot drop on left foot, progressing weakness to legs. March 2021, no change in NCS or EMG, (1 1/2 years after initial test) I was told I do not have ALS. Happiest day of my life.(Still getting weaker)
Re-diagnosed with ALS April 2021 second saddest day of my life.
I have had MRI’s again. Question I do have red feet at night and bilateral foot numbness. Has anyone experienced this?
I also get right hip pain and right rib pain when I sit for more than 5 mins. I I’m walking with a walker, and can not climb stairs.
thanks in advance.
 

lgelb

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Nov 5, 2009
Messages
10,387
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Lost a loved one
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Country
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State
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City
Seattle
I'm very sorry to hear about your reconfirmed diagnosis. Have you had a second or third opinion on this? We would encourage that. Red feet and numbness are not typically part of early ALS.

It's fairly common for older people to have spine problems that improve symptoms some after surgery, but an EMG, history, and exams should clearly differentiate between spine problems and ALS.

Using a walker might not be allowing muscles to stretch as much as they might, so I would work with a physical therapist to develop a regimen that you are able to do for now.

Best,
Laurie
 

Snowbird270

New member
Joined
Apr 18, 2020
Messages
7
Reason
PALS
Diagnosis
02/2020
Country
CA
City
Delta
Thanks Laurie,
I am looking into a 3 opinion.
Im thinking of going to the Mayo Clinic, Minisota. Any suggestions?
 

lgelb

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Messages
10,387
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Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Where were the first two opinions from? Was a second EMG done for the re-diagnosis? If you would like to post your report(s), we might be more helpful.

There are good ALS centers in SF, LA, and SD for example -- hopefully you should not have to travel to Mayo.

Some institutions such as the Cleveland Clinic have second opinion programs via telehealth, which might be safer in terms of Covid, if you have high quality EMG tracings and other important data. At the least sending records to a leading center might yield more information as to whether it's important for you to actually go there, if that made sense.
 
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