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scaredat25

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PALS
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Oxford
Hello, everyone -

I apologize right off the bat for being so nervous and worried about this disease. From what I've read, all of you who have been diagnosed with ALS have a great outlook on life. It makes me embarrassed to think that I haven't been living life to the fullest recently because of my fears.

I'll try to make this short. I am 25 years old, in good health, with very little family history of disease (no cancer, heart problems from smoking) other than anxiety. :oops: About two months ago, I started having numbness and tingling in my left arm and hand. Occasionally I would feel it in my leg. I had xrays done and was found to have scoliosis of the cervical spine. Went through some physical therapy - everything appeared to be back on track. At that time, I was also going through a stressful period and experienced twitching in my left eye.

Recently (within the last week or two), I have been experiencing twitches (fasciculations) all over my body. They're mostly confined to my calves, although I have felt (and seen) them in other parts of my body, including my right arm by the elbow, my back upper thighs, my feet, the side of my hand by my thumb, etc. They do not seem to be confined to one side, although the eye twitches that I mentioned previously have moved to my right eye/eyebrow. I have slight cramping in my right calf when I lie down, and experienced slight cramping in my left leg while driving a few days ago. I should also mention that I just started birth control (Nuvaring) last month.

I don't know if I have weakness because I do not really know the signs. I have lost a lot of muscle tone/flexibility over the past few years since getting out of high school and not being as active in sports and such. :) My arms do not get tired while drying/fixing my hair after a shower, and I do not seem to have any problems walking. They do not appear to be atrophied, but again, I am unaware of what to look for. My muscles are currently quite sore from going to a huge amusement park on Monday, riding rough rollercoasters and walking everywhere.

I am absolutely terrified that my symptoms are that of ALS. I haven't been doing much of anything for a couple weeks now because I figure "what's the point?" I have a doctor's appointment this afternoon, but recently left a high-stress job and am without insurance. I am willing to pay for peace of mind, but I thought I would come here first and see if I could get any reassurance or encouraging from people who know what it's actually like.

Please help me. This is consuming my life and I feel that I have to hide it from family and friends, which only makes it worse.
 

scaredat25

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PALS
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I've noticed that my post has been viewed 20 times... is there someone out there who can shed some light on my questions?
 

Sunshine

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Hi, Scaredat25,

I know it can be hard not knowing why you are having these problems but try not to stress yourself out. Stress can make things worse. My husband is in the process of getting his final diagnosis. He definitely has motor neuron disease but the doctor is running some more test to be certain of the diagnosis. It has been a long process. You may just have a few things going on at the same time and it might not be ALS. If you are not that active, a long day walking etc. will make you sore. You are taking a new medicine so maybe you are having some side effects from that. Hang in there and continue to see your doctor. Take care.
Sunshine
 

DavidGL

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PA
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Huntingdon Valley
Hi Scaredat25,

I am not currently diagnosed with any MND, though I had received a prelim diagnosis from a neurologist of bulbar palsy. This is mainly due to the fact that an ENT diagnosed me with an atrophied vocal cord (it manifested itself in the form of a hoarse voice, which was why I went to see him). The ENT had referred me to the neurologist because he saw it as a possible symptom of ALS.

During the lengthy period (2 mos) of waiting to see a neurologist I developed additional sypmtoms very similar to yours. Notably, strong stiffness in my calf and thigh muscles which made walking somewhat difficult. The neuro decided to do the EMG as a result of his clinical exam and it came out negative. He was thus able to rule out ALS/MND but made it clear that he could not preclude the possibility of progression and a positive EMG in the future. He asked me to see him again in 3 mos for a follow-up. A month later I began to have the fasciculations in the same way that you describe yours. I actually see them more than I feel them (in my right calf--though they do occur in many other places).

I did not show *any* signs of weakness in my muscles. The only atrophy is in my vocal cord. My voice *has* gotten weaker in the last month so perhaps there is more going on there.

I think that you are getting yourself very worked up at too early a stage. There are other explanations for what you are experiencing. Any muscle weakness that you would demonstrate clinically (such that you might be suspected of having ALS) would be quite profound. You would *know* it. I say this because in the clinical exams that I've had the doctor applies very little pressure when asking you to push against him. Wait and see what your doctor has to say before you begin to make any assumptions. Even if you *are* on the road to some motor neuron disease it would take quite a bit of time to diagnose--no point in getting agitated now.

From what I can tell there a lot of people here who really know this disease so just be patient and wait for them to answer. People have busy lives, you know. :)

Take care,
David
 

gilly

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don't be scared

hi there.

my best advice i can give to you right now is to stop reading about ALS. stop researching it and looking for symptoms and working yourself into a frantic mindset. you're 25. be 25 and let the doctors do whatever tests they have to do to help you sort out the cause of your symptoms. it took a while for my aunt to be diagnosed with ALS. it's a disease that requires a lot of patience. but you don't have any definitive diagnosis yet. you should try to keep your mind busy and get yourself out and about. it will help. the less you concentrate on the search for symptoms, the less you'll notice them, i would imagine. i've heard that twitching is less noticable when you are exercising that body part. maybe go for a long walk and listen to music or take a bike ride or just dance your energy out and sing into a hairbrush for a while!

it's normal to worry about your condition. but try to let your mind roam free for now and enjoy your days instead of worrying about what may or may not be going on in your body right now. you will find incredible support on this site. but again, try not to read too much until you know what your situation is. you could do more mental damage with anxiety from learning about ALS than you could ever experience physically. right now you have the power to control your mind and your thoughts. concentrate on making those happy "things".

xo nicole
 

paula B

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PALS
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wisconsin
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seymour
take a deep breathe

short and to the point,,,,if you have als you wont have to look for it,,it will find you. So until you know just be happy and live your life to the fullest. Worrying will not help,,so why waste energy on it.
Paula
 

scaredat25

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Aug 23, 2006
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PALS
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OH
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I really appreciate the responses I've gotten here. I know in the back of my mind that I am probably fine. I seem to look for reasons to be more upset when there are times of stress - which just compounds the stress, obviously. I am currently out of a job and having a tough time finding another one. I am also prone to anxiety, depression and hypochondria - my mom used to have to hide the medical dictionaries from me at nine years old because I was constantly flipping through them to find diseases to diagnose myself with. :)

I am also going to pay a visit to my friendly psychotherapist soon. Above all else, I am going to STOP this searching on the internet, because any symptom you search for elicits horrible results. Headache = brain tumor, cough = lung cancer, neck pain = meningitis... the list goes on.

Also, I need to realize that worst case scenario, if I do have a terminal illness, there's absolutely jack I can do about it, so worrying does NOTHING.

Paula - your response is absolutely what I needed to hear. Thank you. I do best when someone kicks me in the butt. :mrgreen:

Gilly - you are so right. I am not going to let this anxiety take over my life. I actually am going to hold off going to the doctor, because I really don't have the money to blow on something that I know in the back of my mind isn't a problem. I have always been good at knowing when something is really a problem, and when it's just worry, although I do have a tendency to let the worry overtake the rationale sometimes. :)

David - From your response, as well as Paula's, that's what I'm beginning to understand about ALS - that if I did have something, I would know beyond a shadow of a doubt. I'm noticing as I have read people's stories that they are not going to the doctor because of some apprehension - there is something truly wrong and they want to know what it is!

Sunshine - Thank you for the reassurance about the muscle soreness. I know that it's caused by a shock to my system and my inactive lifestyle (which I need to change ASAP!), but these darn medical sites are so good at making you feel like your fears are real. I'm stopping the searching NOW.

Thank you again, everyone. You have been most helpful.
 
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