Speech difficulties, follow weakness, fasciculations, atrophy in left leg

[Carrsn]

Hello, I am 18. Before you click off this post please take my symptoms into consideration, I am not here to say i have ALS. I am having some pretty scary symptoms I would just like to address for anyone with knowledge while i wait for my physical on the 20th which i will then bring up my symptoms. If anyone can take the consideration to read mine it would be greatly appreciated just to tell whether this is leading to possible ALS/MND and if not if anyone who had anything mimic ALS (besides BFS) lead me into a possible right direction.

I know the probability for someone my age, especially sporadic is extremely rare. But I know the cases of FUS are present in majority of JALS patients and is pretty progressive. Again, I feel selfish to be here even though this is a symptoms forums because there is people terminally ILL with such disease.

But here i go, around march i started having some slight difficulties pronouncing things and I notice everyone has been constantly asking me “what” and to “speak up” any time I talk. The problem is, it is difficult to raise my voice because my tongue isn’t rolling the letters like i could a few months ago. Saying things like “literally” etc is very hard for me now and speaking sentences, but i had no anxiety regarding ALS etc. Until a month later I would get occasional Fasciculations in my leg, progressing to my other leg, then arm, then my entire body. Once the fasciculations started In that area, I would have weakness,

A way to describe would be my legs and arms feeling like Jello, my arms would shake to raise then and at the same time of onset, my ring and pink fingers have became completely tight as if they are double jointed. Moving them up and down is like 3 clicks (if you can imagine that, kinda like trigger finger but no popping etc just more or so like double jointedness) and has been getting progressively worse. I have atrophy in my left leg, and not just over exaggeration) it is pretty noticeable, especially when i bend my knees my upper leg muscle is completely halfed compared to my other leg. So currently I experience all those symptoms in a duration of a few months.

Reading ab JALS is quite scary (especially sporadic cases) because of the severity and duration of progression which is kinda what made me worry because I have progressed super fast. I just don’t want to jump to ALS but every-time i look up my symptoms it comes to come sort of NMD. It’s causing some great anxiety and I can hope u understand why I am worrying, its not just a few twitches it’s pretty severe. I can still walk and do daily task, just a lot harder. If anyone with the knowledge can tell me what they think please do. I don’t deserve this at my age, I really don’t.

Sorry if this is super long, I just need some answers. The only thing I can say, is my symptoms only started showing up when I developed a nasty bacterial infection in February that lasted a few weeks. It gave me a rash (pityriasis rosea) diagnose by derm. I don’t know if it would cause these symptoms months later and if so possible auto immune? If anyone has any relations to what I experience and figured it out or who has ALS and can ease my mind.

I have had bloods, panel of bloods for auto immune, ANA, inflammator etc.

I also have occasional tingling when I cross my legs (was my first symptom to all of this) as if my foot fell asleep. Which is pretty normal for everyone when left in the position for too long BUT it occurs almost instantly and I can’t sleep on my side anymore because my arm instantly gets tingling and vibration, as well as my foot. I am limited to certain movements…again don’t know if that’s a completely different cause or related. Hopefully it is related because that points away from ALS but the fasciculations, speech, weakness, atrophy is scaring me. I also know JALS symptoms seem to be very unique to one’s diagnosis especially with fused in sarcoma, some even having sensory issues which scares me even more.

Are these symptoms relatable/typical to ALS onset?

 

[lgelb]

The type, range, frequency, and onset pattern of your perceived issues do not resemble ALS. Google's algorithm is not a medical marvel and I can get dozens of dire diagnoses by typing in a few words.

I am sure that your exam next week will be reassuring. It will help the doctor if you summarize everything in writing in a few paragraphs, with when things started and what you have experienced. If anything, your issues suggest a sleep or muscle problem that can come up in early adulthood.

Meanwhile, body positioning can have a lot to do with how you feel and your quality of sleep, so I would stay off search engines and medical sites, and instead do a deep dive into the conditions in which you sleep and keyboard, including basic things like no screens before bed, de-stressing (are you doing too much? too little? taken up with FOMO?) a good pillow/mattress/chair, etc.

Best,
Laurie

 

[Carrsn]

This means so much thank you, i’ll be sure to update this thread after my next appt. and so forth. I’ll probably be referred to the nuero on the onset of my symptoms as i’m sure this point more nueromuscular issues.

 

[Carrsn]

Hello, to update I went to my primary where I talked about my symptoms, she said possible deficiencies or electrolytes can cause those imbalances. Which I am aware of, so i’m waiting for those results. My nuero appt isn’t until september but my symptoms are getting worse, shortness of breath, hoarse breathing, speech issues and continuing atrophy of my legs which is quite noticeable. I would post here if i could, but would onset of bulbar and limb onset occur at the same time?

Hoarse Voice
My hoarse voice isn’t directly in my voice, rather just breathing in deep and out is not clear and sounds hazy. Is that considered hoarseness? My speech issues are also getting worse, just hard to say what i want to say and breathing is difficult.

Atrophy
Would atrophy occur first/be an early symptom of ALS? Would atrophy occur after the limb has no use, or during the ability to still walk and move. I can still do both but notice very tight and hard muscles when bending and muscle loss and dents and ridges that are new and getting bigger in my legs. Im just not sure whether atrophy from ALS is related to inactive use or something with the neurons itself as a result, if i can still walk and have atrophy can that still be a symptom of ALS or would by the time i had atrophy would I not be able to walk very well.

I know i’m young, but every week i look at my legs i am noticing very significant changes in my leg mass and it almost makes me wanna panic. I don’t know if i can wait till September, i really just want an EMG to put this out of my worry. I don't think a normal doctor would ever cross their mind to think i would have ALS without proper neurological tools. All my symptoms seem to be more relatable to this than anything else, i have found deficiencies that can cause twitching but most of the other symptoms aren’t adding up to anything else not related to JALS

To note, the atrophy is in both legs. And weakness in both arms and legs, is that a common onset or if it was ALS would the onset be in one leg or arm. I’m just not sure if i haven’t noticed it in one arm and it has already spread evenly. I have shortness of breath, speech issues, and leg issues. Which is basically 3 different onsets in a span of 4-5 months. Not sure if u can have multiple onsets at once

 

[lgelb]

I'm guessing your PCP didn't see atrophy or worrisome voice changes. And yes, a PCP can pick these things up without being a neurologist, even if they would refer to a neurologist for a consultation. If they are worried, they get the appointment moved up or find a neurologist that can see you sooner. If you are in a panic, you too can call around for neurologists in your network that might have availability and get a referral from your PCP if your plan requires it. You can also get counseling and talk this through.

You can also do a telehealth consult with a neurologist (this is available in every state if you google, even if your health plan/clinic doesn't offer it), and that might reassure you somewhat.

Ultimately if your local neurologist thinks it's appropriate, they will order an EMG. But you should not hold your life hostage to that visit or test, meanwhile.

To answer your question, ALS doesn't show up all at once, you're not going to miss the first arm it shows up in, and shortness of breath/perceived speech issues often relate to lack of sleep, stress, anxiety, poor diet, lack of exercise...so these are all worth looking at and any/all is a much greater likelihood than ALS or anything like it.

 

[Carrsn]

Okay that sounds good, but almost all my symptoms showed up at the same time. If was ALS, would all of these show up all at the same time even if as young as I am? Widespread fasciculations, hoarse breath, slurred speech, tight feeling in throat (Globus) stiff fingers, atrophy in legs, widespread perceived weakness. These symptoms started out slowly involving my speech, but everything else happened one day after I woke up and then slowly breathing.

 

[Nikki J]

No ALS symptoms do not appear all over your body like that in a day no matter how fast the progression.

 

[Carrsn]

Well I would say generalized weakness occurred, i can still do everything but I am so confused on my symptoms. Is there other causes for atrophy and fasciculations other than ALS? It’s to the point there’s a noticeable difference in my legs and I’m not sure what to do. I’m hoping for a less serious cause but everyone who has BFS doesn’t have atrophy and I do. I just hope there is other causes, the atrophy occurred in a few weeks…well at-least when I noticed it and it’s becoming very hard to type. I cant participate in physical activity and I literally/physically can’t squat and get off the ground anymore. My parents are becoming concerned and have noticed my gait is very off. I’m walking around super wobbly and lifting my entire leg off the ground, although I still can..my leg completely shakes. I just can’t fathom the possibility, like there is no way at my age (18) I have this but my bloods came back for electrolytes and deficiency’s completely in range and remarkable.

 

[Nikki J]

Yes there are other causes. Myopathy for example causes all the things you say you have. It is far more likely at your age too but it is not the only thing.

Get your parents to help you navigate the healthcare system. Laurie gave you some ideas in her last post to you. We can not diagnose you or order tests for you. We can only say whether it sounds like our experience or ALS which it doesn’t. That is not to say there is nothing wrong with you. What is really important though as you seek answers is not to focus on a single disease or try to direct your care. Your approach should be I have xyz symptoms what is wrong with me? If the answer is I don’t know your next question is how do I find out? More tests? A different doctor? When you focus on one disease it limits the doctor’s focus which can slow diagnosis

 

[Carrsn]

I understand and when I go to the doctor I stay away from asking for certain things to be done and just let them handle it, but i’m having hoarse sounding breathing when I breathe in and out and atrophy in both my upper leg thighs.

I just have some questions regarding my symptoms and how they correlate or don't to things like MND

How does breathing sound in ALS, and does it cause hoarse breathing as a presenting symptom rather than voice? All of these symptoms occurred at one time during the night and slowly getting worse (Besides the atrophy, first noticed a curve in my left thighs months back, that slowly has gotten bigger. When i squat, u can see the outline of it very well. That’s where the fasciculations started as well, same time I noticed some problems with my speech and hoarse sounding breathing)

Is hoarse breathing (not voice) considered Bulbar or respiratory onset?

By the time I would have hoarseness would I have trouble communicating, I wouldn’t complain as much on my speech besides my words sounding jumbled together especially when i say things like ”literally” or any word with the letter H, my tongue just has trouble keeping up.

Is atrophy a presenting symptom in multiple limbs or mainly one, I have trouble tapping both of my feet now…As well as atrophy in both my upper legs. Very noticeable difference, I would include a photo if I could. I’m just very young and the odds are in my favors but I don’t understand why this is happening to me? The only thing I can remember is me just getting sick months back with a bacterial infection, I see things like myositis to consider as the atrophy I have seen looks very similar to mine but myopathies as such don't cause fasciculations like I am presenting with? I’m only 18 and scared, I should be able to tap my left foot consistently and now i can’t ): and my friends constantly ask me why my speech sounds so off and I hate them having to make me repeat myself so much.

 

[Clearwater AL]

Carrsn, you're only 18 years old and you are fretting over ALS?
You joined last June 13th, you haven't read threads we have
posted many times concerning the odds against of someone in
their teens having ALS?

The worst thing you are doing to your Health Anxiety is searching
here and the internet trying to match your many self diagnosed
symptoms only accelerating your concerns.

Please let the doctors be the ones to help you... not Dr. Google.

Finally, again, where are your parents or guarding people (if so) on this?
Are they going with you to these appointment?

You've asked questions, given answers by extremely ALS knowledgeable
members. Your recent questions now need to be answered by doctors.

 

[Carrsn]

My parents put me on the cancellation list for nuero but have not received any sooner appts yet. I know how rare it is but it’s just hard trying to sit here knowing something is wrong ALS or not, I don’t want to be here but I don’t know how to seek answers in the mean time. It’s affecting my fingers, legs and my speech and i'm concerned for myself. Things don’t get better regardless of how I feel, I went on vacation and it was nice to keep my mind away from things but my symptoms were still present then affecting my ability to hike and my fasciculations bothering me constantly. I already had deficiencies and imbalances ruled out.

 

[Carrsn]

Question, if i'm having issues with my hands, atrophy in my legs and bulbar issues is that likely of something else, does als usually start in a focused point on the body?

I went back to my doctor and said my symptoms are concerning, identified atrophy and told me to recall the neurologist and see if I can get a sooner appt.

Im having excess saliva, and noticing some differences in my swallowing, this occurred after my first symptom of slurred speech and breathing hoarseness a few months back.

Wondering if excess saliva is an early symptom of bulbar, or does that occur once I would already have noticeable speech issues besides slurring. The saliva isn’t to the point i’m drooling, but it affects my speech when I start to talk because it pools in my mouth.

 

[Clearwater AL]

Once again... you're asking questions and presenting symptoms here that
should be answered and addressed by your doctors.
And these questions and symptoms when you have the appointment with
a Neurologist.

Maybe someone here may address your concerns...

 

[lgelb]

Nikki said it clearly -- ALS doesn't start everywhere at once.

As Nikki also noted, myopathy is certainly more common at your age, and less serious. I don't know what your PCP sees, but wanting it checked out doesn't mean you have ALS. I continue to note that if a PCP urgently wants you seen by a specialist, they make the call, not you.

Did you ask or did they mention seeing an ENT? Excess saliva can relate to allergies, GERD, poor sleep, a salivary gland stone or infection, etc. That might be someone to see while you await the neuro appointment.