17 and suspect JALS, apologies for invading this forum but am struggling

Status
Not open for further replies.
Joined
Jan 7, 2021
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MD
City
Potomac
I’d like to start off by apologizing for coming into this community to seek help rather than offer support. I’m glad we live in a day and age where such a thing exists on the internet for all these amazing people to connect, and I feel intrusive posting this as I haven’t been diagnosed.

My symptoms started when both of my legs began to fasciculate. I have a history of a ruptured disc in my L5:S1 vertebrae, and we are still unsure if they correlate because of the onset of all of my other symptoms simultaneously. The rareness of this injury for people my age (I was 14) already has me worried when people mention the rareness of JALS.

Fasciculations began to get worse after 5 days, and then my right thumb began to tremble as I used it. This “thumb muscle” began to feel sore and weak. This weakness spread to the other side of my hand and up my arm as well, but has since subsided and I believe much of it could have been in my head. The weakness I felt was such that typing for a short amount of time my right arm would feel significantly fatigued compared to my left.

Since then, muscles in my neck twitch about 10 times a day, different muscles in my face including my nose, eyelids, lips, and sometimes but rarely muscles in my right arm. My right shoulder has felt much weaker than my left, and is noticeably sore, almost like I worked it out hard. My right leg also feels weaker than my left, with the muscles being visibly slightly smaller. My shoulder on my right side is also visibly slightly smaller. Finally, I’ve noticed periodic trembling in my muscles mostly on the right side when using them. No action feels very smooth anymore.

I was given 3 MRIs which were all clean and an EMG/nerve conduction study about 1 month after symptoms started, which was also clean. My neurologist has had most of her contact with my mom, but I intend to speak with her tomorrow to ask her questions myself. She does not know that my symptoms are worsening. Interestingly enough, my legs mostly stopped fasciculating during the EMG but continue to worsen day to day. This is only in legs.

What tipped me to the point of posting here was last night when my friend sent me a video of me laughing in which my smile was slightly uneven, biased toward the left side. In doing some tests with my facial muscles of smiling hard and flexing the muscles individually, the right side of my face feels weaker and now feels tight after doing these tests, which my left does not. In reading about ALS, I identified facial spasticity as a symptom and have worried myself to death over the past day.

Any help at all would be appreciated, and I appreciate your patience to everyone reading this as I understand a lot of people post here asking similar questions to mine. I guess I am just seeking some reassurance in this, when faced with the possibility of my life ending so shortly (although I understand the clean EMG and other symptoms point away from ALS). Thank you all so much and happy new year to all. Looking forward to connecting with you amazing people!

Oh! Forgot to note. I have lost about 10 pounds over the past month for no reason. Since the fasciculations began, I have stopped my daily running. It is strange to me how with no exercise I have lost 10 pounds. I now weigh 134 and am 6’0. Which is a bit concerning to me
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,241
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hello-

I'm sure you've read the Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms already. I am also thinking, while it may seem like forever to you, asking your neuro tomorrow is your best bet. They can observe what you are writing about here and help you figure out what is going on. At this point, you're asking folk to speculate about a very rare (particularly for your age) terminal disease based on your subjective experience, multiple non-ALS symptoms, a previous injury, a clean EMG and a timeline that just doesn't match up to ALS.

While this should all be reassuring, I understand health fears don't always have to make sense- hoping you'll be able to have a decent discussion with your doc tomorrow. It may help to write everything down beforehand to prepare and to make sure you don't forget anything.
 
Joined
Jan 7, 2021
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MD
City
Potomac
Thank you for your quick response. I will definitely make a list now that you mention it, as in my last appointment I forgot to mention a few symptoms and ask the big ALS question, which I regretted afterward. Your reassurance will definitely help me sleep better tonight. Thank you, and will update tomorrow!
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,296
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Everything above is true -- also, I would not stop running assuming you enjoyed it or it helps keep you fit.

Health anxiety can affect your appetite, as can less exercise. Nutrition and hydration are always important and certainly at your age. I would discuss diet/exercise/ideal weight with your primary care doc.

Best,
Laurie
 
Joined
Jan 7, 2021
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MD
City
Potomac
Hello -
Just following up in anxiety as my neuro has not responded to my calls for the last week. I think that switching to an adult neurologist rather than a pediatric one wibe the best bet for me as pediatric neurologists don’t typically deal with this type of thing. Been crazy anxious for this past week and symptoms have been progressing.

The slight muscle weakness I feel in my hand has continued and the muscle has begun to twitch and fasciculate regularly. I’ve noticed it is also slightly smaller than the left side, which is odd because I am dominant in my right hand.

I forgot that I have periodic tingling in my last 2 fingers (pinky and ring) and sensitivity in my ulnar nerve all the way up to my shoulders, where if I shrug my shoulders down my hands tingle. This nerve is sensitive all the way up my arms.

I saw my GP yesterday and she appeared not at all concerned, attributed everything to “neurological stress and depletion” over the years because of my previous injury. She is a very homeopathic doctor though, so it is not very reassuring to me. She initially thought all of this was magnesium deficiency until I saw another doctor.

Let me know what you guys think of my game plan, and I hope to find some progress soon. Waiting is so so hard, and I know this process is not inherently fast.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,710
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Tingling would be another non ALS symptom

there are pluses and minuses of switching physicians as you know. Especially in neurology there is benefit to having someone who has observed you over a period of time and can objectively assess changes. She may or may not have a valid reason for not returning messages. You will have to decide this yourself
 
Joined
Jan 7, 2021
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MD
City
Potomac
Totally. This neurologist is relatively new and hasn’t really maintained contact with me at all. Have been trying to let her know my symptoms are progressing but she is not responsive. The strange thing with this tingling sensation is that it starts in my shoulders, yet the MRI showed no pinched nerve or any issues in that area. It’s strange to me that both sides are affected equally by this irritation yet nothing showed on any tests. That’s why it makes me worry. Thanks for your response though
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,710
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Again tingling points away from ALS which usually starts on one side/ isolated area anyway
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,296
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
And unless there is specific damage causing the tingling, it will not "show on tests." In other words, most tingling, stiffness, tightness and feelings of weakness may be something that you feel, but will not show up on any tests or exams.

It is also normal for you to feel that these are "getting worse," because now you are focusing on them, thinking about them, worrying about them. But specialists give more attention, with justification, to symptoms that they can see in exams or tests, not symptoms that you alone perceive. Otherwise, they'd not have time to help those who have something that requires timely intervention for the most effective treatment.
 
Joined
Jan 7, 2021
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MD
City
Potomac
Coming back for some help after I noticed actual weakness yesterday in my pinching muscle of my pointer finger and thumb. Yesterday, I was suddenly unable to straighten my pointer finger and align it with the rest of my fingers to make “prayer hands”. Or if you know how you straighten your fingers when you was your face, I’m unable to do that now with pointer. Getting very anxious now as MRIs were clean so there is no issue in my spine, what else could it be at this point? Is this weakness congruent with ALS?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,296
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Most finger problems have nothing to do with the spine.

You could ask about seeing a hand specialist for evaluation. You might also reconsider the "homeopathic doctor" as your GP.
 
Joined
Jan 7, 2021
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MD
City
Potomac
Yes I am definitely reconsidering. My hand has a feeling now almost like it’s cold and I’m losing mobility. Not literally cold but similar to when you are cold and you can’t move your hand freely. This is bad. Definite weakness and failure happening.
 
Joined
Jan 7, 2021
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MD
City
Potomac
Hey just following up here. I was tested by an osteopath/PT who seemed extremely knowledgeable and he said all my reflexes were normal, which is very good. He thinks it makes sense my calves fasciculate because of my back injury. He agrees that twitches I feel all over and the concentrated twitching and weakness in my hand is very weird, along with the immense pain I feel in my right shoulder. He worked with me for 2.5 hours and went way over my appointment time to give me extra reassurance, as he’s said he’s treated people with ALS before.

Despite this, I’m still very worried that my hand feels weaker every day in one particular motion. This doctor believes it’s more likely to be a nerve impingement in my shoulder somewhere than ALS, but my countless MRIs showed nothing and orthopedist confirmed this multiple times. As I mentioned earlier, I’m unable to put my right hand in a “prayer position” with my hands both clasped together as my index finger will not straighten fully. Along with this, making a scissoring motion with my index and middle finger in this hand is laborious and when a finger is placed between these to show strength, I have almost none compared to my left. The muscle that provides this strength still fasciculates constantly, and I noticed this failure/weakness a day after it started fasciculating. It came on very suddenly, as I use this straight hand position to wash my face every night and was able to straighten this finger the night before. Attached is a picture of what I’m talking about.

The pain I feel in my shoulder continues relentlessly and is truly a horrible aching pain that seems to have no rhyme or reason. I’ve felt all my muscles in my body feel fatigued and tired over the past week during a bike ride and run. Thanks for all your help guys and looking to pursue an ALS specialist. It’s hard because nobody will see a patient under 18, but am working on it every day.
1FB3901B-E41C-455E-A5AB-459AB2D48154.jpeg
 
Last edited by a moderator:

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,296
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Orthopedic surgeons do see younger patients. If your shoulder is causing severe pain, that might be a next stop. I'm not sure what the PT did for 2.5h, but agreeing that something's weird isn't going to be the last sentence of the documented evaluation, so not sure how reliable this feedback is. Did he evaluate for common shoulder issues like rotator cuff injury, frozen shoulder, etc.?

That you had an unusual spine issue a few years back is much more suggestive of a possible connective tissue disorder or myopathy than ALS or anything like it.
 
Joined
Jan 7, 2021
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MD
City
Potomac
Right, well he said I have some sort of benign joint hyper mobility disorder which could’ve caused me problems. He’s a physiotherapist I think professionally but he says he’s seen weird things happen all the time to his patients. For the 2.5 hours he was doing all sorts of stretching tests and feeling different muscles, testing reflexes, nerves in shoulders, bending joints, pulling my neck, etc. He’s an osteopath after all. But seems highly regarded amongst other doctors in the area for his expertise. I’ve been seeing an orthopedic surgeon for my back issues for about 4 years now. Nothing on MRI for them = nothing they can do about shoulder pain. They said find a neurologist, because they don’t know any. Only pediatric neurologists will take me at this point, and one pediatric neurologist has already turned me away and told me that all are ill-equipped for symptoms like this. Bad situation for me.

On a separate note, does the weakness and twitching I’m experiencing in my hand sound like something you’ve seen in ALS before? I feel like I need something compelling for an adult neurologist to cave and see me. Not sure. I have another EMG though from a different pediatric neurologist on Feb. 4. I think if it’s clean I have nothing major to worry about. But I am thinking, all this weakness, tightness, and twitching in my hand should not be clean on an EMG. Very worried.
 
Status
Not open for further replies.
Top