Old 07-20-2006, 03:14 PM #1 (permalink)
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Unhappy Very Scared

As I sit here I am terrified. I am a 27 year old female with ALS symptoms. It all began in early May with tingling in my left foot and numbness in my face. I had an MRI done of my brain and cervical and nothing was found. They then had me do one of the lumbar because of the tingling in my foot. All was normal. The Neuro then did a EMG of my left leg and said that everything was normal there too. I could tell that something was definetely not normal. I began having muscle spasms all over my body. Then came the pain. I was convinced I had MS and that was devistating enough. Then I started looking more online about my symptoms then came across an ALS website. I had everything that it said. So I kept going back to my GP and telling him these things were going on and he said that it was due to high stress because of my seperation with my husband. I was going through alot of stress but to cause all of this would be very rare. I then saw another Neuro and by that time I was having tongue twitches and noticed some atrophy on my right calve, which is in my left calve now also. He did an EMG of all four limbs and said that there was nothing wrong. I have also noticed that my mouth looks different. I can't smile as big and it looks like my face has "dropped" my lips also have seemed to lose there former shape. I don't know if that makes any sense. It is also hard for me to walk in my heels which before were no problem. I am very scared and was wondering if this sounds like anyone else's symptoms.

I have an appointment with an ALS specialist next week at Virginia Mason Hospital in Seattle and hope he can give me some answers.

Any information would be greatly appreciated.

Thank you and God Bless you all and you are in my prayers,

Sara
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Old 07-20-2006, 03:36 PM #2 (permalink)
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Hi Sara. I'll give yu a little advice. Stay off the internet until after next weeks doctor's visit. You are going to go nuts looking up every little symptom that you see someone else has. Try to stay calm and remember that you have a better chance of being hit by lightning than having ALS at your age and it progressing as much as you say in 2 months.
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Old 07-20-2006, 04:03 PM #3 (permalink)
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Thank you for your reply. I know the internet is my enemy right now. I just feel weaker and weaker everyday and it is frightening.

I was wondering if you know of anything else that could cause all these symptoms. I have been tested for Lyme, Lupus, b-12 etc..

Thanks again GrampAL,

God Bless,

Sara
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Old 07-21-2006, 02:29 AM #4 (permalink)
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Depression will make you feel weaker. MS could cause this and is more likely given your age and gender. There are a lot of other dideases that could cause these symptoms. Just try to stay calm and wait for the doctors visit. And don't go looking for the other diseases. Promise me you'll go out and try to do something fun that you haven't done in a long time this weekend. AL.
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Old 07-21-2006, 11:07 AM #5 (permalink)
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Thanks again. I am planning on going with a friend to a local event this weekend. I just hope I feel strong enough to go.

I also want to say that I admire your strength and courage to deal with what life has given to you. I hope that I am able to muster up that kind of strength to deal with whatever is going on.

Thank you again and God Bless you,

Sara
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Old 07-21-2006, 03:54 PM #6 (permalink)
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If you can, relax. You have been referred to a great ALS Certified clinic. They fast track finding if you have it and are very thorough. I'll be there on tuesday for my quarterly visit.
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Old 07-21-2006, 06:25 PM #7 (permalink)
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Tracy22,

Can I ask you what doctor you were seen by initially?
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Old 07-21-2006, 06:44 PM #8 (permalink)
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Default Scared too...but taking one day at a time!

I too have had a normal EMG and an abnormal EMG...I am also 27 years old and for over a year I have been working on my diagnosis, but in the meantime I continue to progress with symptoms. Even though the only thing for me to do right now is to symptom treatment according to doctors, I am going to keep moving forward and giving each day my best shot...

Remember to take each day as it comes and make the best of it....I too have been in that worry stage and know what you mean, but even after a year, they are not saying POSTIVELY ALS, some do some dont, so I refuse to sit and wait....

My mom is constantly telling me how a positive mental attitude will work wonders....and I am beginning to believe in that...
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Old 07-24-2006, 02:05 AM #9 (permalink)
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Hi Sara,
I can completely understand what you're going through...I am also 27 years old and was diagnosed with ALS in June. I started noticing differences when I was playing volleyball and was just getting weaker and weaker. Then the twitching came and I went to the doctor. My first EMG was clean, but I didn't have any other symptoms at the time. Soon after the test though, I started developing foot drop and was limping soon thereafter. I also thought it was MS because the EMG was clean, so I had an MRI of my brain and spine and then had a spinal tap, but all were normal. Finally my neurologist had me repeat my EMG. And finally they found some motor nerve damage which ruled out MS. At first my neuro thought it could be an immune disorder, so that's what we were hoping for and that's how we treated it. Unfortunately the treatment didn't work which pretty much meant it was ALS. I sought two more opinions and they agreed.
So here I am not even 30 yet and most people would consider me "lucky" if I make it to 40. It's definitely hard to deal with. I really just try to live it up...not that I'm planning on taking an early exit, but just because it's easier to deal with if my mind is constantly occupied. Take Al's advice and stay off the internet because it will drive you crazy! I find that even I have to be careful, though I already know I have it. I'm even cautious on this website because it scares me to read about other people's symtoms because I'm afraid of them happening to me.
Anyhow, I'm not a doctor but if I were you I'd still hold out hope of it being MS. Numbness and tingling aren't really a symtom of ALS. Plus you've had clean EMGs. And there are cases of diagnosable MS without any scarring in the brain or spinal cord. So who knows, I'd just try not to stress until you know. And then when and if you find out, you can deal with it then. I know it's easier said than done, but it's honestly what I did. I didn't worry at all about ALS because of my age and gender, etc., so it was shocking when I found out. But at least I saved myself some of the pain and worry beforehand! Good luck and let us know what you find out!
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