Rapid Onset of Symptoms

[BobbyT]

Hello,

I have been monitoring the forums for quite a while now and I wanted to see if anyone can point me into the right direction. I am in the middle of the process of getting a Neurologist to see me, but after a long conversation with my PCP and her mentioned MND/ALS and MS onset, I'm curious to see if any of this lines up and if there is any advice on my next steps and things I should be looking for with a neuro and my PCP

My symptom onset is as follows.

1. Noticeable twitching and spasms in left leg (shin, calf, thigh, feet, etc) and a feeling of weakness. I feel the twitching in my right leg sometimes as well, but less often. I did the heel toe test and was fine, but I noticed I am only able to do butt kicks with my right leg and my left ankle seems to go "dead" when I attempt to on my left side.
2. Right arm and hand cramping and feeling off when typing. I have never struggled with typing until very recently. I also have a dull ache in my elbow and chest/back.
3. Facial spasms. Specifically the left side of my nose and above both sides of lips when i make certain facial expressions and hold them. Which I have also noticed some loss of smell
4. Difficulty swallowing and having to take deep breaths throughout the day.
5. Loss of appetite
6. Body temp changes (sweating and onset of chills throughout the day at random)
7. Voice seems to be slowly getting quieter/ losing my voice and certain letters cause vocal changes and slurring/stuttering
8. Insomnia and noticing the spams all over my chest, stomach and body non stop throughout the night

I did have COVID in December, but all of these symptoms have recently come to fruition starting in April and have gotten progressively more noticeable each day.

I thank you for any guidance or assistance.

 

[ShiftKicker]

Hello-

Please make sure to read here: Read Before Posting

It outlines why things like sensory issues and autonomic system (body temp regulation) troubles point away from ALS. You may also find this link of interest. Covid can cause long lasting symptoms, some of which are not realized for months. It is also possible to have an asymptomatic infection that gives rise to longer term issues.

You ask what you should be looking for with your doctor and neuro? They are the people who are directly involved in your care and will guide next steps. If you are experiencing new or increasing symptoms, check in with them to see what you should be doing next, as they are the people who can make referrals for further testing if they thinks something is needed.

Take care

 

[BobbyT]

Thank you for the prompt response. It seems like I have to wait about 4 months in my area to get an appointment with a Neuro. I did read that as well, thank you. Long Covid was my Doctors first call, but has since given way to working with a local neurologist because of the other symptoms pointing toward a more complex ailment.

Everything I've read up until this point has brought me here, so I appreciate what you and the other mods are able to provide..

Does any of this sound ALS related at all? I understand the complexity, but given the time line of the neuro, I'm trying see if there's something else I can potentially look into.

 

[ShiftKicker]

I do urge you to read the "Read Before" link. As I said in my first reply, you list symptoms that point away from ALS and towards something else. Symptoms are looked at as a whole by a doctor- so while you probably searched "twitching" and saw ALS listed, your whole collection of symptoms point to something else.

 

[BobbyT]

Hello,

I was able to get in with a Neuro who ordered an MRI and bloodwork. He did not seem to be concerned with ALS, and instead really hawked on my anxiety issue and was concerned with my upper back pain that I’ve had for 2 years.

He did all reflex tests and noted that I was positive for Hoffmanns sign on my left hand. All other tests seemed good/normal.

He said that he didn’t believe an EMG was necessary and explained my muscle twitching as most likely benign but I did want to touch base with some of the members here regarding Bulbar onset and if I’m demonstrating anything with this.

I noticed that I have had a globus sensation since around March. I have since noticed the following:

1. Thick mucus build up throughout the night that is hard to swallow.
2. My throat clicks often when I try to swallow saliva/ mucus
3. Acute loss of smell
4 feeling like constant post nasal drip throughout the day but it’s not getting any better
5. Facial twitching when I open my mouth
6. Developed stutter as if I’m thinking of my next sentence in the middle of my current one
7. Myoclonic sleep jerks right before I fall asleep (just started noticing this for the first time)

Is any of this consistent with ALS or is there an alternative that I should be concerned with? My blood work, Ct scans and x rays were all clean as of March 31 if that helps.

 

[Nikki J]

Long covid was already brought up to you by your doctor. your symptoms don’t add up to ALS to me but more importantly did not to your neurologist

 

[Bestfriends14]

No, it's not consistent with ALS.

 

[BobbyT]

Last question for Bulbar onset understanding:

I was under the impression that difficulty swallowing (throat tightness) was the number one red flag.. I’m able to swallow food and liquids but they’re noticeably more difficult and I do find myself having to clear my throat of phlegm often. There’s no slur that I notice, but I definitely think my voice is a bit deeper and it sounds a bit more strained/raspy.

Does this point away or point toward so I can bring it up with my Neuro, or try and get with an ENT?

 

[Tomswife]

What you describe is not typical of early bulbar onset. Often PALS do not have difficulty swallowing, but when they do swallow, they choke and cough.

Analyzing, worrying. Tracking symptoms is not curative. Be well. Let the physicians help you and order needed tests.

 

[BobbyT]

Hello and thank you for the time and feedback so far.

After speaking with my Neuro and MP, they are starting to take my symptoms a little more seriously and I have had a blood test and MRI scheduled. My Neuro stated that he doesn’t think ALS but thinks it’s extremely debilitating anxiety, even thought I was positive for the hoffmans sign in my left hand.

My swallowing issue, night sweats and insomnia issues seems to have gotten better after being prescribed Kolonopin.

I did leave one thing out that I find to be overlooked and a bit concerning. I have had an issue with fluctuating pain in my upper right back that seems to get worse over the last several years. It becomes extremely painful after walking or running and It sometimes radiates into my chest area. All scans were okay and didn’t show anything aside from a duplex kidney..

So on top of the fasciculations all over my legs (most left calf and thigh and always after activity), I’ve noticed them in my chest, my face and triceps. I still don’t notice any weakness, but I do feel as if my voice has gotten slower and my balance seems a little off.

Again, sorry to be fishing so much for information.. I’m awaiting blood results now.. but with ALS as something that I’d constantly on my mind, is there anything I’ve mentioned here that points to it or should I be chasing something else? I thank you all for any feedback so that I know what to talk about with my Neuro.

 

[ShiftKicker]

Hello-

Sorry you are still struggling to find answers. You appear to be under the care of diligent medical professionals, so your best bet is to keep working with them to figure out what is going on. It's excellent news that some of your symptoms have been mitigated by prescribed meds.

It is definitely hard to wait for test results and appointments, I empathize, but filling in the space between with online searches and forum posting may not be a good or productive plan. While your fear of ALS specifically causes you to wonder if each and every sensation/symptom points to it, there are hundreds of other causes for these issues. It is not really something the folk on this forum can help you with- you do not appear to have ALS based on what you report here, nor do your physical symptoms and the results of clinical exams by medical professionals.

It is really up to your doctors to tease out what might be the problem- this forum can not be used for that. You are essentially asking for strangers on the internet to speculate whether you have a specific terminal disease based on subjective experience- which could contribute to ongoing anxiety, as well divert from finding the actual cause because you appear to be busy trying to relate everything to ALS symptoms instead of allowing for other causes.

Please take care.

 

[BobbyT]

Thank you for your response. I understand that it’s impossible to get a diagnosis from here. It’s just been an extremely mind numbing, lonely and stressful experience since a teledoctor muttered the possibility which sent me down this rabbit hole.

I really do appreciate the straight forward response and I hope I’m able to spread some awareness or positivity from this experience at some point.

I think I was mainly looking for a push outside of ALS to stop obsessing with it.. my Neuro and Primary don’t see concerned as of yet, but I think i agree with you that this is unhealthy.

 

[BobbyT]

Hi all,

Not sure if anyone is in the same boat as I am, but I have now gotten my blood tests back, seen a Neuro, and have also seen an ortho due to bad mid back pain/stiffness (since 2021)

To date, no clinical weakness, but the twitching has now spread to my hands, triceps and chest. My hands and upper arms have been cramping/painful as of late and my throat tightness seems to only be helped with anxiety meds.

Mri on the 19th. Bloods didn’t show any CK or B Reactive Protein damage which my Neuro told me is a good sign to keep my mind at ease.

It’s been well over a month now since I’ve been down this rabbit hole.. would I have progressed to any failure by now? I understand every case is different, but it seems as if my speech has definitely had some slurring (I definitely fumble over some words and have a bit of a lisp) and my throat tightness only gets better with Klonopin.

Additionally, I’ve been experiencing night time jerks throughout my body that have been pretty odd.

Again, not looking for you guys to diagnose me, but I’m looking at all possibilities here so that I know whether or not I’m wasting my time/ resources chasing this.

I apologize for any annoyance this is causing

 

[ShiftKicker]

We-ell, you are definitely not in the right place at this time. There simply isn't anything more the folk here can do for you, as ALS is not supported by what you report. There are so many conditions that include the twitching and sensory issues that you are experiencing and it's really up to your doctors to tease out what the issues may be. To focus on ALS when you do not report the hallmark symptom of clinical weakness means you are drawing focus and wasting time with your doctors eliminating it instead of asking them what is on their list of possibilities and working towards what is the problem.

I repeat what was posted to you before- this forum can't help you with a diagnosis. Only your doctors can do that. We can only state that what you report here and what your doctors have observed/ tested for do not support ALS. It's frustrating and worrying to not have concrete answers, we definitely sympathize- but this forum simply is not set up to provide anything other than the most basic of information to those who have not been diagnosed. There are definitely general health discussion forums and peer support groups out there- reddit, FB, etc- that do not depend on the resources of folk who come here for support for the day to day issues that arise with an ALS diagnosis and we must spare all our energy for this.

Please take care, and please keep working with your doctors. Hopefully you will be able to get more answers from them as you leave focusing on ALS behind you.

 

[BobbyT]

Hello and thank you for the responses.. I received my mri results and unfortunately they came back with some bad news on my part.

While my orthopedic doctor is going to be giving over some options with me regarding surgery on Monday..

My neuro is very concerned as well.. ALS and MS are on the table as a cause (neuro wouldn’t say it, but he has now ordered EMGS and brain MRI’s) but the ortho believes otherwise and things the disc protruding into my spine and causing the damage is the reason for the neurological issues I’m facing.

Is there any cases of this happening in other ALS patients? (Myelomalacia) in the back as a presenting symptom?

Again, I also have muscle twitching and jerks body wide (calves, thighs, feed, face, arms, chest), hand tremors, and back pain/ tightness. And a tight throat and an oddly shaped tongue. Neuro said it was scalloped but with this news I don’t know anymore.