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karenhopes

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Joined
Jul 24, 2012
Messages
13
Reason
Learn about ALS
Country
US
State
AZ
City
Tucson
Hello Everyone,

I think I have ALS and no one believes me not even the neurologist.

My twitching started two years ago and now I think I have muscle wasting in my hands and feet.. There is a big dent in the side of my foot where the arch is and one on the top of my hand. The doctor says I have strength in my hands and feet just because I could carry a chair and walk on my tiptoes and heels but the twitching is getting worse and now I have some sharp pain thingy all over my body that almost feels like a burn in different places. Please have a look at my photos of my foot and hand and tell me if you see the muscle wasting. I also want to know how long to I have to live if I have ALS. I am so scared please give advice. No EMG performed as not in the country I am living will be at home in the States within a month. Help
 
Wait for your appointment. It sounds to me nothing like ALS symptoms.
 
I agree with Ms. Pie!
 
You need to be thinking about nerve damage or Fibromyalgia, not ALS. ALS doesn't cause burning, as it is not a sensory issue. And by the way, a pALS (person with ALS) doesn't just get a couple of symptoms and only those symptoms for two years. It would be progressive.

Rest easy.
 
Exactly, if you have had ALS for 2 yrs, you would definately be showing clinical weakness that the doctor would notice
 
You have no idea how big a sigh it causes us when people throw out "just because I can carry a chair and walk on my heels" as an example of how silly their doctor is. If you are in a place in life where that doesn't seem like a valuable strength test, you shouldn't be worrying about ALS.

Get some help for your anxiety, a few dents that cause no functional problems shouldn't be prompting you to ask "how long will I live?". Anxiety will take away all of your quality of life, and for what?

Alternatively, you could volunteer for a home help agency and carry chairs (or groceries, etc) for people who are too weak to do it themselves.
 
Hello Everyone it is me again. I know you all said that two years is too long to be having twitching but some of the newly diagnosed people did not find out for 2 or 3 years and had symptoms. I am scared really my whole body twitches and some times my finger will do this shaking thing for about 2 to 4 seconds. I have a dent in my foot but the doctor said it from the edema I suffer. Please Guys just help me understand what are the symptoms of ALS.

Thank you and I am sorry for all those who have been diagnosed may God bless you and I always believe in the impossible.
 
Ask you doctor any questions you need answering Dear. You wouldn't be able to walk Without assistance after two years. Wait for your appointment. Your symptoms do not sound like ALS. Trust your doctors.
 
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Go to aboutbfs.com. Sounds like you have BFS
 
You have no idea how big a sigh it causes us when people throw out "just because I can carry a chair and walk on my heels" as an example of how silly their doctor is. If you are in a place in life where that doesn't seem like a valuable strength test, you shouldn't be worrying about ALS.
witching was
Get some help for your anxiety, a few dents that cause no functional problems shouldn't be prompting you to ask "how long will I live?". Anxiety will take away all of your quality of life, and for what?

Alternatively, you could volunteer for a home help agency and carry chairs (or groceries, etc) for people who are too weak to do it themselves.

I know y'all it might seem stupid or ignorant my comments and I know a lot of you have been diagnosed with ALS and feel like I am wasting your time but my fear is real, my dent in the top of my hand and the sides of both my feet plain to see. Remember when you all first knew something was wrong and people said it was in your head? It first I blew it off, the twitching was mild then it started in my chest wall on my lip, hands, butt, feet, virtually everywhere. It comes and goes. I Did an MRI normal, blood work low potassium, but not so low to case this. I'm not sleeping sometimes my voice goes hoarse just when I sing or raise my voice just a little. These are all signs of ALS. Sometimes my butt hurts to where it's painful together out the chair when I've been sittinga long time and stiffness when walking upstairs. I am 49 not 100 so this should not be. I'm not sleeping any longer just on the Internet nonstop. The neurologist here in Kuwait looks like she is 12 and yes picking upa chair, standing on my tiptoes, walking on my heals seems stupid to disprove I don't have ALS. No EMG in the country ad I'm scared as hell to take it. When I old the doctor look at the twitching she laughed at me and said it s in my mind,she could not see them but I was feeling them. You guys are the only ones I have, even my husband laughs at methe parkinsons group laughed too, but I am not.
 
Please for give the bad grammar my iPad does some weird things with the auto correct.
 
Remember when you all first knew something was wrong and people said it was in your head?

By the time a pALS realizes there is something wrong, it has been apparent to others as well.

Twitching in ALS does not "come and go."

I'm not sleeping sometimes my voice goes hoarse just when I sing or raise my voice just a little. These are all signs of ALS.

No, they are not!

Please do as sadiemae instructed and check bfs!
 
I don't doubt that you've scared yourself half to death with your searches. Walking on your toes and heels is a standard test to prove or disprove clinical weakness. I'm sure the doctor also tested your arm strength, grip strength, reflexes and ran an instrument on the bottom of your foot to see if your toes fanned out with your big toe sticking up. I don't think you're stupid or ignorant. I think you're scared. I also don't think you have ALS. YAY! I sure wish my doctors just thought I was nuts.
 
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