wonkybody
New member
- Joined
- Jan 15, 2023
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- City
- Haileybury
Thank you for giving me the opportunity to make this one post. I will try not to take up to much of your time. I would also like to donate to the community and would like to know where the best place is to do that if it’s this site or a similar organization.
Here we go, my names Andrew. I’m a 31 year old with a wife and four beautiful children. Smallest one is only 4 months old.
I’ve been suffering with some mystery health concern for the last 3 months. My symptoms are autonomic in nature but very atypical.
I’ve read many studies that suggest there is a link between ALS and central nervous system dysfunction, namely what is called sympathetic hyperactivity and sympathovagal imbalance. I have been clinically diagnosed with both of these conditions which are broad terms for a highly dysregulated nervous system.
I’m concerned I’m in the prodromal phase of a neurodegenerative condition. For years I suffered from REM behavioural disorder which is highly associated with neurodegenerative disease down the road.
I’ve had almost every test in the book done except I haven’t seen a neuro yet.
Three months ago I was mostly okay, these days not so much. My symptoms are progressive in nature meaning I have no good days and steadily acquiring more on an almost daily basis.
I have inappropriate sinus tachycardia, basically my sinus node does not regulate my heart beat and it consistently tries to adjust its tempo even at rest. My bpm is never ever under 100, I have a exaggerated response when standing typically seen in POTS patients. I also suffer from worsening venous insufficiency so blood pools in my feet in the upright position.
I’ve had a few hypertensive crises over the last few months with a max BP of 220/100.
For some reason or another my feet are constantly cold and sweating profusely 24 hours per day. I’ve also developed many cherry angiomas across my body.
I’ve had worsening abdominal pain and x ray showed fecal impaction which makes sense as I’m very constipated. I have not noticed many motor neuron issues and I know that points away from ALS. I’m concerned for a few reasons though still.
I recently begun having quite visibly noticeable fasciculations. They are in my arms, my legs, my glutes, eyelid, shoulder, back and calf’s. I get about 50-100 of these per day. When I sleep it feels like at least half of my body goes numb and tingly as if they fell asleep from compression. Lately I’ve been stumbling on my words quite a lot, I can’t speak with grace anymore and my words come out with improper pronunciation.
There’s a noticeable unsteadiness in my ability to remain upright, I seem to bump into walls, have poor depth perception and drop items at random. I’ve tested my grip strength and it appears normal.
I’ve read some concerning articles online in hopes of figuring out what’s wrong with me other than the broad term of dysautonomia.
I’ve read that norepinephrine is higher in ALS patients, low testosterone and sympathetic imbalance all has literature that associates it with early stage ALS according to pubmed and NCBI. This is not an area that is normally studied because one it’s atypical presentation and two normally the motor neuron is the focal point for people to seek care. I do clinically have low T, high norepinephrine and sympathetic imbalance to a very real and dramatic degree. With the progressive nature of my symptoms I’m very concerned that this is something that might end up in the differential diagnosis pile.
I don’t notice any tongue fasciculations but when my tongue is extended there is a very obvious and pronounced twitch on the left side of my lip and cheek that persists for as long as I extend the muscle.
I will not post again about this until I have a diagnosis whatever it may be. I’m very grateful for anyone who can give me their time to address my concerns in regards to an atypical diagnosis of ALS.
Here’s a list of my current symptoms
Mild hand tremors, fork shakes when I hold it is when it’s most noticeable.
Pulsatile tinnitus ( hearing one’s own heartbeat )
Muscles falling asleep without compression
Body wide fasciculations
Chronic constipation
Irregular and rapid heart rate
Orthostatic hypertension
Mottled feet
Cold clammy feet
Heart palpitations
short term memory loss
Blood pooling in feet
Tight neck and localized pain in shoulders
Dramatic increase in heart rate upon standing
Engorged veins on genitalia
rapid gum recession
Phosphorous wasting ( cloudy urine )
Head and ear pressure
I know none of this screams ALS but I’m going to link a couple of the medical studies I’m referring to so you can see why I’m here. I didn’t go searching for this diagnosis but when I began trying to research my symptoms and my diagnosis of sympathetic sensitivity and symathoval imbalance I came across some very worrying literature and would like to know if it stands true for any of you if you can think back to the preclinical/prodromal phase of your diagnosis also I’ve if you’ve had an atypical presentation.
Here we go, my names Andrew. I’m a 31 year old with a wife and four beautiful children. Smallest one is only 4 months old.
I’ve been suffering with some mystery health concern for the last 3 months. My symptoms are autonomic in nature but very atypical.
I’ve read many studies that suggest there is a link between ALS and central nervous system dysfunction, namely what is called sympathetic hyperactivity and sympathovagal imbalance. I have been clinically diagnosed with both of these conditions which are broad terms for a highly dysregulated nervous system.
I’m concerned I’m in the prodromal phase of a neurodegenerative condition. For years I suffered from REM behavioural disorder which is highly associated with neurodegenerative disease down the road.
I’ve had almost every test in the book done except I haven’t seen a neuro yet.
Three months ago I was mostly okay, these days not so much. My symptoms are progressive in nature meaning I have no good days and steadily acquiring more on an almost daily basis.
I have inappropriate sinus tachycardia, basically my sinus node does not regulate my heart beat and it consistently tries to adjust its tempo even at rest. My bpm is never ever under 100, I have a exaggerated response when standing typically seen in POTS patients. I also suffer from worsening venous insufficiency so blood pools in my feet in the upright position.
I’ve had a few hypertensive crises over the last few months with a max BP of 220/100.
For some reason or another my feet are constantly cold and sweating profusely 24 hours per day. I’ve also developed many cherry angiomas across my body.
I’ve had worsening abdominal pain and x ray showed fecal impaction which makes sense as I’m very constipated. I have not noticed many motor neuron issues and I know that points away from ALS. I’m concerned for a few reasons though still.
I recently begun having quite visibly noticeable fasciculations. They are in my arms, my legs, my glutes, eyelid, shoulder, back and calf’s. I get about 50-100 of these per day. When I sleep it feels like at least half of my body goes numb and tingly as if they fell asleep from compression. Lately I’ve been stumbling on my words quite a lot, I can’t speak with grace anymore and my words come out with improper pronunciation.
There’s a noticeable unsteadiness in my ability to remain upright, I seem to bump into walls, have poor depth perception and drop items at random. I’ve tested my grip strength and it appears normal.
I’ve read some concerning articles online in hopes of figuring out what’s wrong with me other than the broad term of dysautonomia.
I’ve read that norepinephrine is higher in ALS patients, low testosterone and sympathetic imbalance all has literature that associates it with early stage ALS according to pubmed and NCBI. This is not an area that is normally studied because one it’s atypical presentation and two normally the motor neuron is the focal point for people to seek care. I do clinically have low T, high norepinephrine and sympathetic imbalance to a very real and dramatic degree. With the progressive nature of my symptoms I’m very concerned that this is something that might end up in the differential diagnosis pile.
I don’t notice any tongue fasciculations but when my tongue is extended there is a very obvious and pronounced twitch on the left side of my lip and cheek that persists for as long as I extend the muscle.
I will not post again about this until I have a diagnosis whatever it may be. I’m very grateful for anyone who can give me their time to address my concerns in regards to an atypical diagnosis of ALS.
Here’s a list of my current symptoms
Mild hand tremors, fork shakes when I hold it is when it’s most noticeable.
Pulsatile tinnitus ( hearing one’s own heartbeat )
Muscles falling asleep without compression
Body wide fasciculations
Chronic constipation
Irregular and rapid heart rate
Orthostatic hypertension
Mottled feet
Cold clammy feet
Heart palpitations
short term memory loss
Blood pooling in feet
Tight neck and localized pain in shoulders
Dramatic increase in heart rate upon standing
Engorged veins on genitalia
rapid gum recession
Phosphorous wasting ( cloudy urine )
Head and ear pressure
I know none of this screams ALS but I’m going to link a couple of the medical studies I’m referring to so you can see why I’m here. I didn’t go searching for this diagnosis but when I began trying to research my symptoms and my diagnosis of sympathetic sensitivity and symathoval imbalance I came across some very worrying literature and would like to know if it stands true for any of you if you can think back to the preclinical/prodromal phase of your diagnosis also I’ve if you’ve had an atypical presentation.