35 Female and worried about ALS

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jdcrist54

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Hi! I am hoping you all can help dispel my worry.

I am 35 year old female that started having problems about 9 months ago - noticing fatigue in my hands at work, and then cramping. (Pain is only the cramping pain when trying really hard to use my hands)
Went to hand orthopedic doctor who said it looks neuro involved. Had clean cervical MRI, have had clean brain MRI.
Saw neurologist, who stated maybe have hyperreflexia - as only borderline increased. but clearly muscle weakness in patchy distribution in hands.
Ran a bunch of blood tests and all are negative.
ordered EMG, but cannot get in for another 2 months so I am currently just waiting and worrying about different potential diagnosis.
I have seen occupational therapy to get splints for my hands and try and make more functional, and found out just how weak my hands are.
I have 12lbs of grip strength (normal for 35 year old female is like 65-75lbs...) and I have 0lbs of pinch ( normal is 12-15lbs).

So to recap.
I am 35 (so young)
only noting hand weakness (but significant loss) - no Leg weakness, no face or swallow or talking or other problems.
negative blood tests (not sure what all testing, but ALOT of different tests all ran by neurologist, all clean)
clean cervcial MRI
clean brain MRI
very weak hands -normal strength throughout rest of body and rest of arms

could this be ALS? or since only hand involved, can that rule that out? I cant get in any sooner for EMG and my neurologist is tight liped and waiting for testing to say anything about any diagnosis (which I totally understand).
 

Bestfriends14

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Could you explain a bit more as to what your hand weakness is? Can you do up zippers, buttons, zip lock bags, and water bottles? Typically, ALS starts in one area of the body, such as a hand, foot, or mouth area, and spreads from there. Both hands to start would be unusual, but not knowng too much of your history, it is difficult to hazard a guess.
 

affected

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I'm sorry you have to wait for the EMG - you could call and ask to go on a cancellation list as people do often cancel for many reasons and that might bring things forwards.
Was the hand strength test you are talking about is one performed by a doctor?
There are many things that could cause hand issues, so it might be premature to jump to something terminal.
 
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jdcrist54

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I can do zippers (hard but could still complete) , but could not do snaps or buttons until I got splints for my hands. As I cannot really flex my finger tips well (too weak) but I can flex the lower part of my fingers, so the splints let me do those things now in altered fashion.

The strength tests were performed by occupational therapy to document and monitor strength loss.
I have muscle tests showing loss of function in some muscles, decreased function in some, and normal function in other muscles in each hand. Pattern of loss rules out pinched nerve or other similar peripheral conditions.

Thank you for pointing out loss in each hand would be unusual- it’s pretty symmetric loss. (I am a little stronger in my left, but not much)
I was hoping for some good reality checks to help NOT going down the rabbit hole of panic and worry while waiting for more tests 😞
 

Nikki J

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I am sorry you have to wait. Agree symmetric onset is highly unusual. As noted above do call about being on a cancel list. If it is true that you could go with only a couple of hours notice say so. make friends with the booking person.

also make sure your doctor is aware of the wait time. Sometimes they have no idea and when told if they find it too long they can call. But especially with covid and holidays there may be last minute openings
 
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