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lilly

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hello everyone, i've been experiencing some ALS-like symptoms for a while now and it's driving me completely crazy! any help would be loved and greatly appreciated!
to start off, i'm a senior in highschool. a bit over a month ago, i started to feel slightly lightheaded, along with mild fatigue. at first i thought it was just a cold but then the dizziness got worse when i try to sleep, which was accompanied by some ringing in the ears. went to the doctor's for a checkup, measured my blood pressure, sugar level, thyroid, etc, all came back normal. a week later the dizziness went away but my head was still fuzzy and my whole body felt weak. i had also noticed muscle twitching in my legs, which quickly spread to all of my body. after the twitching persisted for about a week, i went back to the doctor's, where they did a manual neuro checkup on me (walking on heels/toes, reflexes, etc) and everything was normal. about a day later i noticed some pressure in my chest when i breathe. thought it was heartburn so i took some otc drugs for gas/bloating. it got better at first but worse later on. i couldn't sleep for a couple of nights because i had this feeling like i wasn't taking in enough air. later on i noticed fluttering in my chest and also heart pounding. at this time, my legs feel like rubber when i walk and tremble when they get cold/tired. my arms also felt weak and slow. went back to the doctor's for a third time to check my heart but couldn't find anything wrong. finally last weekend i went to a different doctor who checked my blood pressure again, came up around 70/40 which he told me was extremely low. the doc concluded that the low blood pressure was probably the cause of my shortness of breath and fatigue since my heart couldn't pump enough blood through my body and gave me multi-vitamin and potassium/calcium tablets to help with the muscle twitching. i came back feeling slightly better but since then have noticed a sticky throat and excess saliva in my mouth (which prompts me to swallow every 10 seconds or so, seems fine when i sleep though, no drooling). i have not noticed any changes in my body, weight, or ability to walk/run (though i tire out quickly and my legs and arms still feel rubber-like & weak).
even though all the doctors i've been to concur that i don't have ALS, should i get an emg test just to be sure? because i feel like they don't even consider the possibility because of my age- even though there are cases where teens have been diagnosed with ALS.
i've been looking at a lot of websites lately but none of them helped: they only add onto my ALS-anxiety, which is already scaring me to death: i can't concentrate on anything, nor can i sleep :cry: so i'm praying to find some better answers here! thank you all very much in advance!
 

BWk

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Lily,
We are not doctors here, but it does not sound [symptoms] quite right for als to me. Have you seen a heart doctor yet? Also only about one person in a million your age gets als think of those odds and that should help calm you. Twitching does occur with other medical problems. It takes the doctors awhile to get to the bottom of things. Once when I was in my Thirties my doctors took a long time to find out what was wrong with me and it turned out only to be a minor medical deal, but I thought it surely had to be something awful. Hang in there. Barry
 

Al

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As Barry says we aren't doctors but the low blood pressure and possibly a bit of hyperventilation could explain some of your symptoms. I'd recommend you stay away from the medical sites. They can scare you into imagining all sorts of symptoms. People come here every week freaked out because they've read things and are convinced they are going to die. I'd bet it's MORE than a million to one that you don't have ALS. Hang in there kid. The doctors will figure it out. It just takes time. AL.
 

Paty

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Dear Lily

Dear Lily:

I totally agree with Barry and Al, don't think you have A.L.S., and as Al says, stay away and stop looking, Doctors will figure it out .

God bless you,

Paty (Husband's caregiver)
 

CindyM

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Hi Lily. I just wanted to welcome you to the forum and encourage you to try to relax and wait and see if your symptoms develop into something that allows the doctors to pinpoint what is going on. It is hard, at the age of 17, to recognize when your body is telling you that you need rest and when it is telling you that it is really ill. One way to get to the bottom of things is to go out with friends and have as good time as you feel able. Do this as often as you can manage.

I am not saying to forget about your symptoms but if there is anything seriously wrong, only time will tell. Reading the medical websites and worrying will not solve anything. So go have some fun and check back in with us to tell us all about it!
 

DavidGL

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Lily,

If you haven't already gotten it--you need a lyme test. Your symptoms are a very good match. I have a friend whose 22 year old body building nephew narrowly escaped receiving a pacemaker until his second opinion doctor diagnosed lyme disease. His symptoms were very similar to yours.

David GL
 

lilly

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BWk:
the last doctor i've been to did check my heart and couldn't find any problems. i do hope it's nothing serious. luckily i have a physical due tomorrow, which will give me a chance to mention the new symptoms i've been experiencing. thank you for your input!
 

lilly

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Al:
you're right, but it's the wait that's driving me crazy! so far the doctors haven't really done anything to pinpoint my condition. but i am hoping to see a neurologist mid-dec. just to be safe. thank you very much for your advice!

Paty:
thank you for the advice and comforting words! i'll try my best to stay away from als sites (except for this one) from now on. it's hard though since i'm anxious to find out what i have.
 

liz

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Lilly -

You are NOT going to find out what is wrong with you by searching the web. Nor will you find peace of mind. Three people above, and now me makes four, have ALS and are telling you that your symptoms do not sound at all like ALS. Let that give you some relief from your anxiety until you have finished with the doctors.

Liz
 

lilly

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DavidGL said:
Lily,

If you haven't already gotten it--you need a lyme test. Your symptoms are a very good match. I have a friend whose 22 year old body building nephew narrowly escaped receiving a pacemaker until his second opinion doctor diagnosed lyme disease. His symptoms were very similar to yours.

David GL
sorry if i'm mistaken but shouldn't you notice a rash for lyme? i haven't had any fever or other flu-like symptoms that are characteristic for the disease (except for general fatigue). or do the symptoms vary in individuals? either way i really appreciate the heads-up and i'll definitely bring it up the next time i see my doctor!
 

lilly

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CindyM said:
Hi Lily. I just wanted to welcome you to the forum and encourage you to try to relax and wait and see if your symptoms develop into something that allows the doctors to pinpoint what is going on. It is hard, at the age of 17, to recognize when your body is telling you that you need rest and when it is telling you that it is really ill. One way to get to the bottom of things is to go out with friends and have as good time as you feel able. Do this as often as you can manage.

I am not saying to forget about your symptoms but if there is anything seriously wrong, only time will tell. Reading the medical websites and worrying will not solve anything. So go have some fun and check back in with us to tell us all about it!
thank you so much for the advice cindy! sorry if i sounded like a total hypochondriac but the wait really is frustrating. i'll try to remain calm from now on and stay away from als sites. hopefully the symptoms will start to go away on their own. thanks again for all your help! =)
 

lilly

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liz said:
Lilly -

You are NOT going to find out what is wrong with you by searching the web. Nor will you find peace of mind. Three people above, and now me makes four, have ALS and are telling you that your symptoms do not sound at all like ALS. Let that give you some relief from your anxiety until you have finished with the doctors.

Liz
you're right liz, sorry if i sounded like i was freaking out unreasonably. it's just that i've never experienced the symptoms that i have right now and it's frustrating not knowing what i have. thank you so much for your comment- it really does give me a lot of relief! i'm scheduled for another appointment mid-december and i'll let you know if they find anything. thanks again!
 

liz

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It is OK Lilly. It is very understandable to get stressed by the unknown. You are doing good by folowing through with all of your doctor appointments. Don't be afraid to tell your doctor ALL of your questions and concerns.

Liz
 

DavidGL

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lilly said:
sorry if i'm mistaken but shouldn't you notice a rash for lyme? i haven't had any fever or other flu-like symptoms that are characteristic for the disease (except for general fatigue). or do the symptoms vary in individuals? either way i really appreciate the heads-up and i'll definitely bring it up the next time i see my doctor!
Some people get the rash in a big way. Some in a small way. You may never have noticed it (could've been on the back of your neck etc).
Some people really go down with a "flu", others just put up with a "cold". The reactions vary quite a bit and so do the symptoms.

It is definitely a must-check item as part of the als rule-out. Just be careful that you don't become obsessed with thinking that it is the cause if the tests show otherwise. There is a sizable group out there (even some physicians--two of which have lost their licenses) blaming all of their hard-to-diagnose ills on lyme disease, even when multiple tests show they don't have it.

If you see a neurologist, I am sure he will request the lyme test--just make sure he does! :-D
 

CindyM

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Hi Lilly-I am glad you found us, and you are welcome to stick around regardless of what is causing your symptoms. Did you take my advice and go out with friends this weekend? How are you celebrating Thanksgiving? Take care and be good to yourself! Cindy
 
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