What is wrong with me?

Status
Not open for further replies.

Todd_80

New member
Joined
Feb 21, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Hi all - I’ve been lurking the forum for a few months now and would appreciate some advise. In November 2021 I started experiencing the following symptoms: temple headaches waking me up at night, muscle twitching in both legs and left arm (several hundred times a day), fatigue, feelings of weakness in both quads, AWFUL brain fog that has made work a nightmare, stomach discomfort/nausea that worsens at night. These have persisted for the last four months with no sign of regression.

Long story short, I’ve seen my GP and Neuro. The following tests have come back clean: Physical exam by the neuro, brain MRI, Spine MRI, Brain MRA, bloodwork and EMG/NCS. The doctor who performed my EMG said he could see plenty of twitching but that it wasn’t the “scary kind”.

The doctors said they don’t suspect MND, which I accept. However, I cannot get any kind of definitive answer when I ask them for possible explanations. What diseases mimic ALS that would not have shown up in my testing?
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
7,053
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi there- please make sure to read here: Read Before Posting

You ask what it might be- the above link lists a whole variety of things, and the list is by no means complete. While you state you believe your doctors, you have come on to a forum for those diagnosed with ALS and their caregivers. Your doctors really are the ones to work with and get answers about your symptoms and concerns. It sounds like you've been pretty comprehensively cleared of ALS by the specialist, hopefully they can help you figure out just what it is, as it's clear this is frustrating you.

Take care
 

Clearwater AL

Very helpful member
Forum Supporter
Joined
Aug 28, 2013
Messages
2,471
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Get Real
Todd, as replied above you must work with your doctors to get
your questions answered.

Below is a list of early symptom mimics that make a diagnosis
of ALS/PLS a process of observation, testing, and elimination.

The first one is the most common neurological determination.

Anxiety
Benign Fasciculations.
Myasthenia Gravis.
Multifocal Motor Neuropathy.
The Parsonage–Turner syndrome.
Spinobulbar Muscular Atrophy, or Kennedy's Disease.
Demyelinating Syndrome
Asymmetrical Spinal Muscular Atrophy.
Cervical Polyradiculopathy.
Facial-onset Motor Neuropathy.
Hereditary Spastic Paraparesis.
Primary Progressive Multiple Sclerosis.
Metabolic Myelopathies.
Corticobasal Degeneration.
Cervical Myeloradiculopathy.
Multiple Sclerosis.
Carpel Tunnel Syndrome.

Also replied from above.... "comprehensively cleared of ALS by the specialist."

Lurking here any longer, reading old threads is not advisable... this is an ALS
forum.
 
Last edited:

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,167
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
If not yet ruled out, I would be looking at sleep disorders and conditions like GERD and Restless Leg Syndrome, and any other condition or environmental irritant, from noise to temperature to mattress or pillow, that can affect your quality of sleep without your realizing it. Lack of refreshing sleep (and/or allergies as per below) can cause everything on your list.

Adult onset food allergies or worsening environmental allergies (are your furnace filters clean? are you exposed to smoke? etc.) are another thought. Hopefully, you were screened for adult-onset asthma as well.

I don't think you're looking for an ALS mimic, because your issues don't resemble ALS. I would seek out a good internist, if you don't have one, and work through to root causes, which I suspect are less scary and more treatable than you might think.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,985
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I truly mean no offence, but I'm wondering why you aren't convinced you have a brain tumour?
What you describe doesn't sound even a tiny bit like ALS (nor really like a brain tumour), but you have, for some reason, fixated on ALS and this makes no sense at all.
Please, ask your doctor for help and tell them that you refuse to let ALS go, so they can work with you back to full health.
 

Todd_80

New member
Joined
Feb 21, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Thank you all for the replies. I really appreciate it.
 
Status
Not open for further replies.
Top