Prodromal phase/pre clinical/atypical

[wonkybody]

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.

https://touchneurology.com/neuromuscular-diseases/journal-articles/sympathetic-hyperactivity-and-sympathovagal-imbalance-in-amyotrophic-lateral-sclerosis/

 

[Nikki J]

Please let us know when you get a diagnosis.

you can donate to the site or to an ALS research center. Look at university clinics

no one in my family or anyone I know has had such a presentation. I personally believe Mr Google has led you astray.
again let us know after your visit. Good luck

 

[KimT]

I'm assuming you've seen a cardiologist, you are not overweight, and you have not had Covid and you've had vitamins checked?
Yes, you can report back after you've seen a neurologist. It is unlike any presentation of any motor neuron disease I've seen.

 

[Clearwater AL]

I've read over your list of symptoms, there are a couple Dr. Google sent your brain
to ALS. Other than that... ALS just isn't there. Chronic constipation, Engorged veins
on genitalia, Phosphorous wasting ( cloudy urine ) I am sure when you finally see a
Neuro those will get dismissed quickly concerning ALS.

You've done extensive research which has probably really not helped you with your
Health Anxiety.

As you wrote... "I will not post again about this until I have a diagnosis whatever it may be."

Copy and print your symptoms/post so when you see a Neuro so you don't forget any thing
saving him/her time... they are skilled readers.

I hope you find the path to relief of whatever illness you may have soon.

 

[wonkybody]

I respect all of the opinions here. I was bit by various ticks in a high epidemic area three months before symptom onset but didn’t have a fever nor rash. I appreciate everyone giving me their time. so far I guess it’s just general dysautonomia and I’ll keep looking down that route and get als out of my mind. Thanks for helping me understand better.

 

[affected]

There are links all over this site to donate.
Please don't try and do your own research to become a google doctor and diagnose yourself. That's one deep rabbit hole you will find it hard to climb out of no matter how much evidence you are given later.

Work hard to document your symptoms then find a good doctor who you trust. The internet will never replace that.
All the very best.

 

[lgelb]

My guess is that a calcium channel blocker or beta blocker as prescribed by an internist or cardiologist would go a long way toward your feeling better. IST taxes your body and can manifest in many of the ways you describe. I would also suspect dehydration, which is easy to fix.

Like the others here, I see no reason to worry about ALS.

Best,
Laurie

 

[wonkybody]

Thank you all very much for your time answering my questions.

 

[wonkybody]

Just an update for you all, so far no diagnosis, I’ve been referred to a movement specialist because I’ve progressed further down the road of neurological issues. The doctors have seen my fasciculations as they’ve become very apparent and I’m awaiting a call for my first EMG, there is visible atrophy in my left forearm and have visible tremors at in both hands at rest.

We’re currently accessing me for Parkinsonism’s such as pure autonomic failure and young onset MSA.

Not likely to be ALS at this point with the plethora of autonomic dysfunction. I’ve developed sexual dysfunction and neurogenic bladder.

Thank you and I’m sorry for asking questions here, I was just looking to find the most knowledgeable folks in the neuro department who could help guide me along the way. Thank you for having me and having a space available for me to ask questions. I’ll likely go find some Parkinsonism/MSA groups to see if the answers I seek are more pertinent over there.

 

[ShiftKicker]

Thank you for returning to touch base and let folk here know what has been happening. I'm sorry there are still questions, but it sounds like you've been getting the medical care you need.

If you have a Face Book account, there are a couple groups you might find helpful- Neuronauts (a more general group) and a MSA specific group ("search for: Multiple System Atrophy (MSA)").

Please take care