Help! 18 years old terrified of ALS

[Hithro]

Hello. I am an 18 year old and am scared that I might have ALS. I've been experiencing twitches in my body for 2 months now that came with shaky legs. This got better, and the twitches continue, but i discarded them as benign because they stop when I move, etc. I went to a neuro who did regular tests on me and said I was ok, but this was a month ago, before the hand issues started.

However, recently things have started to get more concerning. In my right hand, my thumb has felt weaker than usual for a while now. It is as if it gets tired very easily, like if I had worked out my thumb. I am an artist and it's starting to feel odd to draw. I chalked up a lot of symptoms to my anxiety, but this seems to be more serious.

I've been wearing a wrist brace and it does not get better. There are no pins and needles or tingling/numbness. My left hand is relatively fine. There is also a strange hole that forms in my thumb muscle when I move my thumb around, but it is otherwise not there. The joint in between my middle finger and hand feels odd and seems to be stiffening very slightly. My fasciculations are not constant, but the feeling of tiredness has spread to my fingers in these past few days.

I can still form a fist and straighten my fingers with ease, and i can still carry heavy objects without the muscle giving out, but the hole that forms in my thumb muscle when i stretch it and the tiredness of my hand plus occassional pain and fasciculations that make my fingers move a little on their own, I am fearing that these are very early signs of ALS.

I do not have a family history and am young, but I am fearing that I fall withing that small percentage. Other symptoms are my vocal range not being the same, hand pains and contractions on the right hand, rubbery feeling of the right hand, and skinnier looking legs even though I have not been excercising. Any feedback, opinions and commentary would be greatly appreciated. I am currently very anxious, afraid, and have no way to get an EMG anytime soon. Thanks in advance to everybody.

 

[ShiftKicker]

Hello-

A few things- go see your doctor tell them all your symptoms and concerns and work with them to find a reason for them. Don't ask "Do I have ALS?" because then they'll only look for that. And when they don't find symptoms of ALS (because you know you don't have it) they will reassure you and then send you on your way without looking at the actual causes of your symptoms.

You also need to read the "READ BEFORE POSTING" thread at the top of the DIHALS Subforum. Your questions are all fully answered there.

Go see a physiotherapist. Wearing a wrist brace with not reduce weakness. Exercise reduces weakness. A physiotherapist can give you a full body strength assessment and provide you stretches and exercises to help you with your weak feeling muscles.

 

[Clearwater AL]

Ok, what if several members reply and say your symptoms indicate probable ALS.

What would you do? You'd only become overwhelmed with more fear and anxiety and make an new appointment with the Neurologist as soon as possible.

Ain't gonna happen... no member here would ever make (or try) a diagnosis of ALS.

If several members reply and say none of your symptoms indicate ALS... will you believe them?

But... if you haven't yet the most logical next step you can take is make another appointment with the Neurologist, copy and print out your post above and take it with you to that appointment... so you don't forget any new symptoms you've posted.

Hope the Neurologist helps you live for many many years beyond your oh so young 18.

 

[Hithro]

Thank you very much. I did read the sticky, saw it after making this post. I will try to see a doctor if these symptoms persist longer. I see in there that many of my concerns were addressed, but I have also seen people in forums whose disease started out in an odd way that is similar to what I have. I do know that the chances of me actually having the disease are very low, and appreciate your suggestions. Thank you very much and good rest of the day.

 

[Hithro]

Ok, what if several members reply and say your symptoms indicate probable ALS.

What would you do? You'd only become overwhelmed with more fear and anxiety and make an new appointment with the Neurologist as soon as possible.

Ain't gonna happen... no member here would ever make (or try) a diagnosis of ALS.

If several members reply and say none of your symptoms indicate ALS... will you believe them?

But... if you haven't yet the most logical next step you can take is make another appointment with the Neurologist, copy and print out your post above and take it with you to that appointment... so you don't forget any new symptoms you've posted.

Hope the Neurologist helps you live for many many years beyond your oh so young 18.

I'm very sorry but I did not quite understand what you meant in this message. I understand your suggestion to go to the neuro, but did not understand your other statement. Were you trying to state that most members would say my symptoms are not related to ALS but I wouldn't believe them?

If so that is very helpful and I will see my neuro if these symptoms persist. For now I am hoping none of this gets worse, and if you meant what I think you did by that I hope that the several members who would say that this is unrelated to ALS are correct as well. Thank you for taking time to reply, have a nice rest of the day. Your help and suggestions are appreciated.

 

[Clearwater AL]

Hithro, as you wrote above,

"I went to a Neuro who did regular tests on me and said I was ok, but this was a month ago." (Just a month ago).

There's indication above you don't trust his/her professional and highly trained opinion. Or now doubt it.

So, if two, three or more members replied, saying in "their" opinion, as you doubted your Neuro, they see no indication of ALS... would you still have doubts and post the next new symptom you may notice or read on the internet or other forums?

Finally, at 18 years old your chances of having ALS is almost the same odds as buying the next winning Powerball ticket. ALS itself is a rare disease.

See the Neurologist again... be honest and say besides his opinion you are still concerned about ALS.

Best wishes to your oh so long future as compared to those members here who truly do have ALS.

 

[KimT]

What you describe sounds nothing like ALS. For your own peace of mind, follow up with your doctor and figure out why you are having symptoms. Did you know that anxiety can cause everything you described? I'm not saying you have anxiety but it should be on the table.

I wish you well and many years of worry-free life.

 

[Hithro]

Hello again, I am sorry for not posting this earlier, but I seem to have left out some of the symptoms I am experiencing. These symptoms are the bulbar kind. ever since one month ago, i have had constant phlegm and have to constantly clear my throat. I had bloodwork done and everything was negative. I do not have a fever or anything, but the pitch range of my voice has not gone back to normal in one month. I know that changes in pitch range and speech are one of the earliest symptoms of bulbar als.

I also have recently felt mucus begin to rise up to my nasal cavity every time i speak, and my friends say that my voice is beginning to sound a little nasal, along with slight slurring and a strange feeling in the tongue. I do not feel any tongue fascics but I have also seen many people on this website and others who do not feel their tongue fascics before they are diagnosed. These kinds of symptoms had never happened to me before and do not seem to be due to allergies or anything of the sort. I cannot see a neuro immediately due to money issues and my family not believing that I have these symptoms, which is why I am posting this here. Has anybody on this website experienced similar bulbar symptoms on the early stages of their disease. When someday I do get tests for all of this, whether i do or do not have the disease, I will make sure to donate to als research for all the help that people on this site and others provide. Once more, any info or advice would be appreciated as I will not be able to see a neuro for a very long time, giving me no way to be rid of this anxiety. Thank you in advance.

 

[Atsugi]

Hithro, our general consensus is that you don't have ALS. No kind of ALS. You didn't describe ALS.

As suggested already, take your symptoms to a doctor. You don't need a neurologist. Just ask a family GP medical doctor about your symptoms and let them figure out what the problem is.

 

[Hithro]

Hithro, our general consensus is that you don't have ALS. No kind of ALS. You didn't describe ALS.

As suggested already, take your symptoms to a doctor. You don't need a neurologist. Just ask a family GP medical doctor about your symptoms and let them figure out what the problem is.

Hello Mike. Thank you so much for answering so promptly, you are a big help. I will try to go see a doctor as soon as possible. Although the general consensus is that I do not have ALS, these strange speech issues getting worse will probably make me stay concerned for a while, but I will try not to, as there are several factors that dictate I do not have it. However, seeing people diagnosed on this site whose bulbar onset began in a similar fashion to mine is very worrisome, and the air going up to my nose when i laugh/snorts when i inhale also make me worry that the muscles are slowly weakening.

I also find it tiring to talk, when I used to love talking a bunch. Despite this, your reaffirmations are helping me stay positive, and I am praying that when I do get the chance to go to the doctor it will not be this horrible disease. If there is any more feedback or help it is welcomed. Thank you to everyone.

I also experienced a strange instance today where I got really excited showing something to my friend and felt tears rolling down my eyes softly. I was amazed by this as i never cry due to excitement. I was wondering if this is what is known as PBS and if it could even show up thsi early, assuming I have some sort of bulbar issue. Responses are welcomed.

 

[ShiftKicker]

Hithro-

Please do not post here again until you see a doctor and can report back what they tell you. I am quite serious about this. Do not post your symptoms here- write them down and hand the list to the doctor instead. The people here can not help you with your anxiety about your symptoms. If you persist in posting here without taking further steps to get REAL medical help, you will be banned from posting entirely. It sounds mean, but you are spending too much time here without pursuing real medical help. It takes up the time of the helpful people here and prevents you from getting actual answers about what is causing your symptoms.

I repeat- see a doctor before posting here again.