Just diagnosed and hoping for slow progression

EMH

New member
Joined
Aug 2, 2021
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2
Reason
PALS
Diagnosis
07/2021
Country
US
State
NH
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Manchester
I was diagnosed with ALS in late July after having symptoms for about 7 months. So far, just my right hand is affected and the weakness has increased slowly since I first noticed it . I know that everyone progresses differently but I'm just wondering what other people have experienced in terms of disease progression over the first year or two after symptom onset and if there were any "warning signs" that a new area was about to be affected. I am pretty sure that the EMGs of my legs were ok, unless I am misunderstanding the MD. I was pretty nervous when we spoke and didn't take everything in. Do you know if the leg EMGs would be abnormal if the nerves in my feet were abnormal? In other words, if there was an abnormality lower down, would it show in the nerves that are higher up? Thanks for your time.
 

Nikki J

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Sorry to welcome you.

as far as the emg question if your legs were clear on emg that is great. The sites generally tested on emg are sufficient the muscles that cause foot drop for example are not in your foot they are in your leg. the emg that detected my onset( ankle) was done in my leg

progression varies so much person to person. All I can say for my own is my second leg started exactly the same as the first. Statistically for limb spread you are equally likely to have it go next to the other arm or to the leg on the side you are now affected

I hope you had 2 neuromuscular opinions and if you have not yet been to mgh please do. They are very proactive and have a number of trials going
 

EMH

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Aug 2, 2021
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PALS
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07/2021
Country
US
State
NH
City
Manchester
Thanks very helpful! I have not yet had a second opinion, but I will get one at MGH. That seems to be one of the places most frequently mentioned on these forums.
 

affected

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Sorry to welcome you here. If you think about how nerves begin in the brain, then connect to the spinal cord, and from the spinal cord connect right down to your foot, then yes if you are having a problem with your foot, nerves being tested high up the leg will show a result because it is the interruption of the impulse travelling along the pathway.

As Nikki also says, predicting progression is so difficult. You may find someone here that turns out to progress just the way you do. Yet you will find many others who progress in quite a different pattern (and speed). With hindsight we know so much, but I often say - the only predictable thing about ALS is how unpredictable it is. I wish we could answer that one!
 

MrEDS

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Joined
Jul 26, 2021
Messages
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Reason
PALS
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05/2021
Country
US
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AR
City
Paragould
I'm sorry to hear that. My symptoms started in right leg and foot, then left leg. A few months later right arm then left arm. Predicting how you will progress is very difficult because ALS seems to hit each of a little different.
 
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