Old 07-14-2007, 10:41 PM #1 (permalink)
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Default Does this sound like ALS? Is my life over?

Hello,


I am a 20 year old male who has been diagnosed with Touette's syndrome, ADD, OCD, and health anxiety. I began having body wide fasciculations about 6 months ago now. At first I was worried about having MS, but after a few months and a trip to the doctor. I finally convinced myself otherwise. I have begun to worry that I could have ALS. I still get body wide fasciculations occasionally, but what's more worrysome to me is that I have developed a twitch after about 4 and a half months of body wide twitching that is more concentrated on the sole of my foot. It doesn't twitch 24/7, but it is consistant. I don't seem to have any obvious weakness that I can tell. I have done many strength tests and my ankle and foot is still very strong in all directions. I can still walk 5 miles and there doesn't seem to be any walking disturbances although my feet will hurt after.

Sometimes my left leg feels funny around the knee (strange feeling, somewhat unstable or shaky after strength tests or standing), although I have had problems with that knee over the years. Also, there does not seem to be any obvious atrophy. There are some winkles on my foot, but they seem to come and go (possibley due to my hydration level?). I can still walk on my heels and on my toes, and I can still do squats with both legs, and with one leg as well. It also seems I have gained 10-15 pounds in the last few months as well.

Does this sound like it could be a slow limb onset ALS? Am I too young for ALS?


Thank you so much
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Old 07-15-2007, 10:46 AM #2 (permalink)
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Sounds like your healthy and you have BFS.
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Old 07-15-2007, 11:07 AM #3 (permalink)
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Doesn't sound like ALS. Fasciculations are constant and do not ever stop.

Go to a nero.

You say you went to the doc, what did he say about it?

CJ
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Old 07-15-2007, 03:21 PM #4 (permalink)
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Quote:
Originally Posted by jimercat
Doesn't sound like ALS. Fasciculations are constant and do not ever stop.

Go to a nero.

You say you went to the doc, what did he say about it?

CJ
I have ALS 8 years and dont have fasciculations contant Te first 5 years I had none.Pat
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Old 07-15-2007, 04:12 PM #5 (permalink)
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That's interesting patricia, give us a little history. How did it all start, how long to diag? Was it atrophy, weakness? Was it a biopsy that nailed it down?

rgds,

jamie
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Old 07-15-2007, 05:42 PM #6 (permalink)
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I started with slurred speech Lump in back of throat choking on water nothing else for 6 years that some fascis in 6th year not alot only in arms then weakness in upper arms Quit work in2005 because it moved to lower arms now in hands no use of arms still walking but starting to get fatigued Speech is about the same for 3years still eating with little problems breathing is good. EMG are clean as of 6 months ago. Went to John Hopkins Saw Dr Rothstein in2005 and in 5mins told me I had ALS By clinical exam. Thasts my sad sorry Hope that helps you understand now different ALS persents God Bless Pat
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Old 07-15-2007, 06:10 PM #7 (permalink)
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Hey Pat,

What I meant was that once you get them they don't stop until the muscle has completely deteriorated. At least this is what I've been told by the neuro. And my husband just has them in his upper body and limbs at this point.

And I agree this disease does present itself in many different ways. Each person will have a different story to tell about how it began and where they are at now. My husband didn't have twitching in what we believe was the onset of ALS. He was just getting very clumsy and first broke both his feet and 6 months later broke his leg. Then a year later had to be hospitalized for not being able to swallow. (not a pretty picture) Then about 9 months later he showed me his hand and arm twitching. I don't know how long he had the twitching because he was very afraid to show me. This has been going on for about 11 months with the twitching following a path from one side of his body to other. It has never stopped and now his arms are "sunken in" and his hands are like bones. Also, about 2 months after he was diagnosed, his speech started to slur like he was a bit tipsy.

Sorry, I should have been more specific.

CJ
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Old 07-15-2007, 07:01 PM #8 (permalink)
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And Patricia told us on the thread "eyes" that the neuro won't give her a biopsy because there's nothing else it could be! With always having a clean EMG all these years. Isn't this completely opposite from all those scales that other pals have told us symptoms have to be consistent with? I would just be so worried that they missed something else that could have been treated because of the clean EMG's. Either that or we have to think EMG's don't really mean all that. My EMG's have always been clean and the biopsy gave the diagnosis. I would recommend everyone insist on a biopsy for a true diagnosis. JMO. ~Leslie
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Old 07-15-2007, 07:40 PM #9 (permalink)
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cj--

can you explain what the arm twitching and hand twitching was like-- was it a complete tremor or fasciculations in the specific muscles?

G
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Old 07-15-2007, 08:07 PM #10 (permalink)
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Quote:
Originally Posted by ltr
And Patricia told us on the thread "eyes" that the neuro won't give her a biopsy because there's nothing else it could be! With always having a clean EMG all these years. Isn't this completely opposite from all those scales that other pals have told us symptoms have to be consistent with? I would just be so worried that they missed something else that could have been treated because of the clean EMG's. Either that or we have to think EMG's don't really mean all that. My EMG's have always been clean and the biopsy gave the diagnosis. I would recommend everyone insist on a biopsy for a true diagnosis. JMO. ~Leslie
Leslie I had slurred speech and that is almost always ALS if the MRI isnt showing a stroke and there is no tumors in the tongue there is no other diagnosed However I will insist on a muscle biopsy. Also I was told there is no true test for ALS not even a cleanEMG means its not als It is a process of elimation. Pat
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Old 07-15-2007, 09:52 PM #11 (permalink)
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I just can't believe all the years you have had to deal with this without getting an answer. It shouldn't happen to anyone. I hope the years have been good to you. It sounds like you have dealt with your illness rather well. I know how frustrated I have been in just one year and eight months without an answer. It's funny how the docs have learned so many different ways of diagnosing. I also wonder what makes one persons bulbar move so fast and others move slowly like yours. I'm glad you are going to get a biopsy, so that you will know if there is a chance it is something else. I'm just glad you're here, your illness has showed us there are many faces and many rules to break! Leslie
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Old 07-16-2007, 06:24 AM #12 (permalink)
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Quote:
Originally Posted by patricia sciarrino
I started with slurred speech Lump in back of throat choking on water nothing else for 6 years that some fascis in 6th year not alot only in arms then weakness in upper arms Quit work in2005 because it moved to lower arms now in hands no use of arms still walking but starting to get fatigued Speech is about the same for 3years still eating with little problems breathing is good. EMG are clean as of 6 months ago. Went to John Hopkins Saw Dr Rothstein in2005 and in 5mins told me I had ALS By clinical exam. Thasts my sad sorry Hope that helps you understand now different ALS persents God Bless Pat

What do you mean when you say lump in your throat?
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Old 07-16-2007, 08:51 AM #13 (permalink)
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It felt like a post nasal drip I really couldnt get up or down I spent the first year sucking on cough drops,but nothing helped That was my first sympton Now that is gone. Pat
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Old 07-16-2007, 11:04 AM #14 (permalink)
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Pat, i have had that for about 6 years, on and off.
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Old 07-16-2007, 11:12 AM #15 (permalink)
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It drove me crazy Isnt that that annoying Pat
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