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ohioprof

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I have to start by letting everyone know that your stories of courage and support are inspiring; I am humbled by all of you. I am not sure if I have ALS or not, but even if I don't, I will have you all in my thoughts and prayers. My ex-wife has a foundation that contributes money to charities of her choice. Fortunately, I still get along with her very well, and I will encourage her to donate a sizeable sum to ALS research. Keep staying strong.
Now for my question: does ALS typically spread from the (hands to the arms) / (feet to the legs) or vice versa? My weakness has started in my upper right arm (mainly biceps and shoulder) and seems to have moved toward my forearms. I still have quite a bit of dexterity in my fingers, though. My symptoms, however, have moved into my legs but my feet seem to be ok. It all started with weakness in my right arm, then moved onto my left arm (same weakness in my biceps and shoulder) about 10 days later. Then a day after that, it moved to my right leg and a day after that happened, moved to my left leg. Can ALS symptoms progress that quickly? I am still able to do all of the things I normally do, but I know my body very well, and I definitely have lost about 10 to 20% of my strenght. Do you guys think it is possible that I have ALS.
 

ohioprof

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ohio
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centerville
I have to start by letting everyone know that your stories of courage and support are inspiring; I am humbled by all of you. I am not sure if I have ALS or not, but even if I don't, I will have you all in my thoughts and prayers. My ex-wife has a foundation that contributes money to charities of her choice. Fortunately, I still get along with her very well, and I will encourage her to donate a sizeable sum to ALS research. Keep staying strong.
Now for my question: does ALS typically spread from the (hands to the arms) / (feet to the legs) or vice versa? My weakness has started in my upper right arm (mainly biceps and shoulder) and seems to have moved toward my forearms. I still have quite a bit of dexterity in my fingers, though. My symptoms, however, have moved into my legs but my feet seem to be ok. It all started with weakness in my right arm, then moved onto my left arm (same weakness in my biceps and shoulder) about 10 days later. Then a day after that, it moved to my right leg and a day after that happened, moved to my left leg. Can ALS symptoms progress that quickly? I am still able to do all of the things I normally do, but I know my body very well, and I definitely have lost about 10 to 20% of my strenght. Do you guys think it is possible that I have ALS.
 

shopathonic

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There's really no way to offer any firm judgment based on your description. Your best bet for ruling ALS in or out is to make an appointment with a neurologist who specializes in neuromuscular diseases. Based on his/her examination and any subsequent testing, you will know for sure what you do or do not have.

Jeff
 

ohioprof

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Thanks Jeff

I do have an appointment next Friday. So you don't know if ALS can progress that quickly . . . movement from one limb to the other three in less than 2 weeks? That is my main question.
 

ohioprof

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One more thing

Fasciculations seem to be an important determinant of ALS. I've been looking at a lot of online sites and they make it almost sound like a slam dunk if someone has weakness and fasciculations . . . but then I also see that it takes such a long time to diagnose ALS. I have had fasciculations for as long as I can remember and they were more pronounced when I was tired or stressed or had fatigued muscles. Well considering my muscles have gotten weak, to me it doesn't seem improbable that my fasciculations would be a little more prevelant. Does any of that make sense?
 

ohioprof

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One more thing

Fasciculations seem to be an important determinant of ALS. I've been looking at a lot of online sites and they make it almost sound like a slam dunk if someone has weakness and fasciculations . . . but then I also see that it takes such a long time to diagnose ALS. I have had fasciculations for as long as I can remember and they were more pronounced when I was tired or stressed or had fatigued muscles. Well considering my muscles have gotten weak, to me it doesn't seem improbable that my fasciculations would be a little more prevelant. Does any of that make sense?
 

caroliney

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statins

Ohioprof,

Do you take any statins by any chance?

Sorry that you have come to this forum under these circumstances, but you have come to the best forum in my opinion for advice. This group of people with ALS know it better than anyone and are my second family with the knowledge.

This Christmas was celebrated without my loving husband due to the loss of his battle with ALS of 24 months. It was hard without him this year, but with family, friends and God, we have somehow celebrated Christmas.

Our family has been focusing on the memories which we treasure as a family. ALS symptoms are different for everyone, like a snowflake, even our time with our loved ones. This disease is so complicated that we as a family just enjoyed each day as if it was our last.

In spite of this ALS disease, it has made myself a stronger person.

Keep fighting for a cure.

Hugs,
Caroliney:)
 

ohioprof

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Thanks for the encouraging words

No, I don't take statins . . . never have. I've led a very healthy life and I hope that I get to continue doing that for years to come. Take care.
 

citytom

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PALS
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Florida
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The Villages
My problems started with dropfoot of the right let two years ago. Then I found I couldn't run or even walk fast. Up to two months ago I was able to use a cane, but had to give that up for a walker. I could see right now that it won't be long till I'm wheelchair bound.

However, my arms are not causing any problems, although some weakness. No breathing or eating problems.
 

nspoc

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Hi Ohioprof -

It sounds like it is time for a thorough exam by a neurologist, preferably with ALS experience.

This could be consistent with ALS, but could be many other things, as well. The weakness that progresses, and moves to other limbs, is concerning.

But get going and get evaluated - if you have something else you can be treated. If it is ALS it is never too soon to get advice and assistance, and to make plans.

One word of caution - if you even THINK it could be ALS, or any other major illness, get your insurance in order right away. Life insurance will be impossible once you begin the road to diagnosis. Health insurance is important, as well - but if it IS AlS, you will be eligible for Medicare as soon as you are on disability. That is another whole story.

As far as diagnosis goes - that is variable. I have seem it diagnosed in 3 months, and I have seen it take years - I believe that is due to the variability of the way ALS presents.

I hope you do not have this disease - but it is time to find out what you do have.

Take care - and please stay in touch - Beth
 

nspoc

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Oops!

Hi again -

Just read your recent other posts. You have more knowledge than I could EVER have in this area, and plenty of experience in evaluating what you read. Anything I could say is woefully inadequate.

That being said -the one thing that jumps out about your symptoms is the time frame - maybe others could weigh in on this - but I have never heard of progression to another limb in one day. One could guess that it was already there subtly and you just noticed it. But if it went from perfectly normal to symptomatic in one day - that is odd.

I have read that you need a loss of nearly 50% of the motor neurons to feel the impact (I suppose due to compensatory mechanisms) - not sure of that. But anyway - a progression in a day (or even 10 days) sounds very unlike ALS. Don't want to give false hope - but that is so huge.

The fastest progressor I was aware of was unable to function in six months, especially breathing. The fact that your motor progression to other limbs is so fast, yet you retain at least 80% of your strength - seems VERY different from anything I know about - could easily be something else.

Again - your knowledge, and ability to research this area, far exceeds mine.

But it goes without saying - time for a professional look at the problem.

Good luck! Beth
 

Tall John

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Mar 30, 2007
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PALS
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06/2007
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ca
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novato
Here's the deal

I know you're freaked out. At this point, there are still several things it could be. ALS CAN move very quickly, but you say you've had fascics for a while ? What area ? Constant ?
 

vmd

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Weakness can be very tricky to measure and I would wait until the neuro does the strength tests and determine whether there is objective weakness. Sometimes, we have the sensation of weakness, but not actual weakness as measured by some objective test. I have never heard of weakness progressing that quickly. Perhaps, some of the PALS will be able to describe their weakness progression.
 

ohioprof

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Answer to Tall John

I've had fasciculations in various parts of my body and they typically occured when I was fatigued, tired or stressed-out . . . that is . . . when most people get them. They happened in various parts of my body, but went away with rest. They seem to have gotten better since I felt them about a week ago . . . and coincidently, I was very stressed and sleep-deprived at the time. My weakness is still in all of my limbs, but it will wax and wane and sometimes on limb is more weak than the other, depending on the day or the time of day itself. I'm continuing to research my symptoms and doing some self-diagnosing. Fortunately, I was a respiratory neurophysiologist for nearly 10 years and now teach physiology in a medical school, so I have the tools to inform myself. I'm no expert in ALS, though . . . but I hope to be very soon. I came to this forum, because it appears to be the best on the internet and you all seem to be very knowledgeable. As soon as my scope of knowledge widens, I will be sure to share it with all of you.
 

Tall John

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Messages
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PALS
Diagnosis
06/2007
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ca
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novato
My deal

Had fascics for 6 months BEFORE noticing ANY weakness, only upper arms and chest, usually when tired or stressed.

I must concur with others here : Your symptoms don't sound like ALS.

When you look at your hands, do you see any atrophy (between thumb and pointing finger) ? If you point your palms down, can you still move your fingers rapidly up and down ?
 
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