Sayitisntso01
New member
- Joined
- Oct 3, 2022
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- State
- ON
- City
- Toronto
Hello everyone,
- first, my sincere thanks for taking the time to help me.
- I’ve read everything there is to read about ALS over 2.5 years and I have the greatest respect and compassion for pals/cals
- I’ve been suffering ALS-like symptoms that are internal for 2.5 years and multiple EMGs and neurological assessments from 3 different hospitals have been negative
- Neuros are unable to tell me what it could be. They are dismissive.
- please please read on
- like I said, I’ve read so so much on ALS that I’ve clearly seen (what many of you may know) that ALS can fool many doctors even ALS doctors and can be very tricky.
- I’ve also read online that 40% of patients get a misdiagnosis where they have ALS but are either not diagnosed with it or diagnosed with something else first. I’ve read of some patients passing away before being diagnosed.
- so I would be very appreciative if you could give me your advice on next step and if possible answer some questions please.
- I know you cannot diagnose me but if you feel it still looks and sounds like ALS please let me know if you can
- I also know you are not doctors but from all the forums and patients sites I’ve read pals and Cals I think at times know more about ALS than doctors do
- I will set my questions just below and then will set out my myriad of symptoms further below.
My sincerest thanks as I am suffering greatly.
QUESTIONS
1- are there some forms/variants of ALS that can go undiagnosed for more than 2.5 years after multiple EMG and Neuro assessments?
2- can some forms/variants of ALS lead to fecal incontinence (loss of control of bowls) and soiling oneself
3- in reviewing my myriad of symptoms, do you believe ALS could still be a possibility?
4- what next steps would you recommend I take?
SYMPTOMS
- 51 year old male
- had lost 20 lbs at onset and have since eaten hunk food ans gained 35 back
- progressive symptoms 2.5 yrs
- genetic testing negative
- lumbar puncture @ 6 mths negative
- general fatigue
- body-wide fasiculations
… incl. 24/7 left thigh fasiculations
… eyebrows, lips, shoulders, arms, back, bum, legs, feet (multiple daily)
- mild difficulty swallowing
- Mild oesophageal dysmotility
- severe oesophageal reflux
- mild dysphagia
- thick post nasal drip constant
- forceful clearing throat of phlegm
- large dry crud in nose constant (never had that before)
- mucus thickening in sinuses (chronic rhinitis that wasn’t there before onset)
- difficulty swallowing thick mucus
- mucus plugs always deep in back of throat
- periodic clicking sound coming from inside mouth or throat
- trace opacification of mastoïde
- crackling sound from throat when breathing
- gurgling sounds in throat
- squirting sound noises in throat like squirting saliva
- uvula doesn’t rise properly with “ahhh” sound
- O2 levels from 99 to 95
- palette tastes and feels odd
- lung test: low diffusion capacity 58% of predicted
- low vitamin D
- low vitamin B12
- very bad startle response
- muscle wastage on bum (now painful to sit in bathtub)
- muscle wastage on left thigh/hamstring with a long crevice now delineating thigh and hamstring and slight indentation on left thigh
- muscle wastage on side of left pec
- all neurologists dismissed muscle wastage, some attributing it to age (there was no muscle wastage before onset)
- hamstrings increasingly wobbly and shaky when kneeling. Can only kneel for a few moments.
- EMG:
… MUP AMP left thumb deemed within normal limits where previous EMGs of thumb were normal
… polyphasic MUPs left thigh and tibia deemed within normal minute where previous EMG of thigh and tibia were normal
- Nerve conduction study: degradation of digit 3 left hand but deemed normal because below 10%
- Myoclonus jerks (hypnic jerks)
- one neurologist detects hyper reflexes
- terrible fecal (bowel) incontinences
…. Now go to washroom 5-10 times a day
… urgent: can’t control bowel movements
… sometimes soil myself
… small pebbles and explosive liquid comes out
… can barely go out now. This all started this bad about 7 days ago
- bad memory loss (cognitive changes)
- bad neuropathic pain in both triceps and hamstrings
… at times triceps so painful that putting on/off a short or jacket leaves me teary-eyed
- drooling on pillow when sleeping
- sleeping with mouth open for first time ever in my life to catch more air
- strange Crystal-like sound in brainstem area
- MRI of brain stem negative
- MRI negative for MS, stroke
SYMPTOMS I “DO NOT” HAVE
- these are some ALS symptoms i do not have:
- I do not slur or have nasal speech
- I do not have noticeable muscle weakness
- I do not have muscle cramps
- I do not have mobility issues
- my tongue seems ok with no twitching
- I do not have tight stiff muscles
- I do not trop or fall
- I do not have major difficulty doing normal activities although I tire quickly and don’t do them as easily as before at all
- my hands are not weak or clumsy
- I do not laugh or cry inappropriately
My deepest sincere thanks for helping if you can. I’m struggling tremendously with my symptoms. Several neurologists have provided no explanation for these symtoms. Thank you for answering my questions aviné if you can or commenting as you wish.
Sincerely
AJ
- first, my sincere thanks for taking the time to help me.
- I’ve read everything there is to read about ALS over 2.5 years and I have the greatest respect and compassion for pals/cals
- I’ve been suffering ALS-like symptoms that are internal for 2.5 years and multiple EMGs and neurological assessments from 3 different hospitals have been negative
- Neuros are unable to tell me what it could be. They are dismissive.
- please please read on
- like I said, I’ve read so so much on ALS that I’ve clearly seen (what many of you may know) that ALS can fool many doctors even ALS doctors and can be very tricky.
- I’ve also read online that 40% of patients get a misdiagnosis where they have ALS but are either not diagnosed with it or diagnosed with something else first. I’ve read of some patients passing away before being diagnosed.
- so I would be very appreciative if you could give me your advice on next step and if possible answer some questions please.
- I know you cannot diagnose me but if you feel it still looks and sounds like ALS please let me know if you can
- I also know you are not doctors but from all the forums and patients sites I’ve read pals and Cals I think at times know more about ALS than doctors do
- I will set my questions just below and then will set out my myriad of symptoms further below.
My sincerest thanks as I am suffering greatly.
QUESTIONS
1- are there some forms/variants of ALS that can go undiagnosed for more than 2.5 years after multiple EMG and Neuro assessments?
2- can some forms/variants of ALS lead to fecal incontinence (loss of control of bowls) and soiling oneself
3- in reviewing my myriad of symptoms, do you believe ALS could still be a possibility?
4- what next steps would you recommend I take?
SYMPTOMS
- 51 year old male
- had lost 20 lbs at onset and have since eaten hunk food ans gained 35 back
- progressive symptoms 2.5 yrs
- genetic testing negative
- lumbar puncture @ 6 mths negative
- general fatigue
- body-wide fasiculations
… incl. 24/7 left thigh fasiculations
… eyebrows, lips, shoulders, arms, back, bum, legs, feet (multiple daily)
- mild difficulty swallowing
- Mild oesophageal dysmotility
- severe oesophageal reflux
- mild dysphagia
- thick post nasal drip constant
- forceful clearing throat of phlegm
- large dry crud in nose constant (never had that before)
- mucus thickening in sinuses (chronic rhinitis that wasn’t there before onset)
- difficulty swallowing thick mucus
- mucus plugs always deep in back of throat
- periodic clicking sound coming from inside mouth or throat
- trace opacification of mastoïde
- crackling sound from throat when breathing
- gurgling sounds in throat
- squirting sound noises in throat like squirting saliva
- uvula doesn’t rise properly with “ahhh” sound
- O2 levels from 99 to 95
- palette tastes and feels odd
- lung test: low diffusion capacity 58% of predicted
- low vitamin D
- low vitamin B12
- very bad startle response
- muscle wastage on bum (now painful to sit in bathtub)
- muscle wastage on left thigh/hamstring with a long crevice now delineating thigh and hamstring and slight indentation on left thigh
- muscle wastage on side of left pec
- all neurologists dismissed muscle wastage, some attributing it to age (there was no muscle wastage before onset)
- hamstrings increasingly wobbly and shaky when kneeling. Can only kneel for a few moments.
- EMG:
… MUP AMP left thumb deemed within normal limits where previous EMGs of thumb were normal
… polyphasic MUPs left thigh and tibia deemed within normal minute where previous EMG of thigh and tibia were normal
- Nerve conduction study: degradation of digit 3 left hand but deemed normal because below 10%
- Myoclonus jerks (hypnic jerks)
- one neurologist detects hyper reflexes
- terrible fecal (bowel) incontinences
…. Now go to washroom 5-10 times a day
… urgent: can’t control bowel movements
… sometimes soil myself
… small pebbles and explosive liquid comes out
… can barely go out now. This all started this bad about 7 days ago
- bad memory loss (cognitive changes)
- bad neuropathic pain in both triceps and hamstrings
… at times triceps so painful that putting on/off a short or jacket leaves me teary-eyed
- drooling on pillow when sleeping
- sleeping with mouth open for first time ever in my life to catch more air
- strange Crystal-like sound in brainstem area
- MRI of brain stem negative
- MRI negative for MS, stroke
SYMPTOMS I “DO NOT” HAVE
- these are some ALS symptoms i do not have:
- I do not slur or have nasal speech
- I do not have noticeable muscle weakness
- I do not have muscle cramps
- I do not have mobility issues
- my tongue seems ok with no twitching
- I do not have tight stiff muscles
- I do not trop or fall
- I do not have major difficulty doing normal activities although I tire quickly and don’t do them as easily as before at all
- my hands are not weak or clumsy
- I do not laugh or cry inappropriately
My deepest sincere thanks for helping if you can. I’m struggling tremendously with my symptoms. Several neurologists have provided no explanation for these symtoms. Thank you for answering my questions aviné if you can or commenting as you wish.
Sincerely
AJ