Hand and upper left issue

[RUSSELLPM]

Hello, I’ve posted here before and I’m back because the things I’m experiencing just continue with no real answers. My father had ALS and had similar type of early symptoms.

On my left side is my issues. I have atrophy between my thumb and index finger coupled with a burning and slight weakness from the same area. Goes from index finger into the back of hand and wrist. Same burning and weakness is felt in forearm and bicep when I use the muscles.
My hand is not the same. Something is wrong. When I use it for simple cup of coffee I can feel the weird uncomfortable feeling from the atrophy area.

Left upper just does not feel right.

I had several EMG’s on left upper only, last one June 2022. All were normal.

All doctors seem to think nothing of what I’m experiencing and I feel lost on what to do. I have a follow up with specialists on Feb 20, but that feels so far away.

I’m trying to think positive, but it just feels worse.

 

[Nikki J]

Prior thread for reference Trying to find answers to hand issues

 

[affected]

Russell, do you know how long your father had symptoms before he was diagnosed? May I ask when you lost him?
You report symptoms starting 3 years ago, so it really seems like it can't be ALS if nothing shows on EMG and you don't have any clinical weakness.
What kind of work do you do? I'm wondering if you do any repetitive tasks that could be causing injury as the burning seems to indicate that to me. But hey, I'm not a doctor and you are saying they don't find anything on exam or testing. That means we really can't input anything much else except to either wait til Feb, or go and see a new doctor yourself for another opinion.

 

[RUSSELLPM]

Thank you for your reply.
He said something was wrong summer 2018 and was diagnosed end of December 2018. His first symptoms were his right hand weakness. He passed 11/21/21 at age 76.

I am 51, before I knew my dad had ALS I first noticed my right hand with slight atrophy change under index finger Jan 2018 and mentioned it to my doctor at a routine exam. I forgot about it till Nov 2020 and noticed the atrophy was worse. Mar 2021 is when I went to a neurologist about it. Hand an EMG then, and my last EMG was on Jul 2022 and they say no change from my first EMG.

My fear is it was too early to show on EMG. I still have strength to do things, just slight weakness and discomfort in the index finger and thumb and forearm when holding things with the left hand only. Feel burn and tightness in that hand atrophy muscle between the finger and thumb.

If you inherit ALS, is it usually in the same or similar symptoms?

Again thank you for your time.

 

[Nikki J]

No ,people with FALS often present differently than their relatives. My sister mother and I all were very different. I happen to be similar to one of my aunts but given the number of people ( I am 6 of 7 in my lifetime) not surprising.

genetic ALS onset at 73-74 is very rare FALS tends to strike younger than SALS

 

[affected]

Thanks for clarifying as it really helps us answer your questions.
Was your father tested and confirmed as FALS?
It would be strange for you to have started symptoms now 5 years ago (you now say first changes in Dec 2018) and think the EMG was done too early. How could it be too early if you say symptoms started 4.5 years before you had the last EMG and there had been no change in over a year?
Have you read the READ BEFORE POSTING sticky at the top of this forum? It should explain all about that for you.

I think you need to really sit down and work through all this with your doctors. Be honest that you have a real fear of ALS and allow them to work out a plan to find what is happening with your hand and how to deal with your fears.

 

[RUSSELLPM]

Hello,

Thank you for taking the time to discuss, I have had no explanations to what I’m feeling.
I feel like I’ve been ignored and just labeled anxiety reasons.

I have seen a two different ALS specialists in Pittsburg, is it possible they could miss it because it is difficult to detect?

My father was never tested for FALS. Since he was the only person in the family known to have ALS, they said it is not likely hereditary.

My left hand is not the same started with just atrophy that I noticed early 2018, now forearm and index thumb muscle all slightly weaker. Pincher grip weaker and pain. Been told arthritic maybe. Bicep tires out factor than before. Recently my legs have seemed like they get tired quickly as well.

When muscles start to shrink and become weaker, that is also when the EMG will detect issues? I assume atrophy/shrinkage of muscle alone would not show on EMG.

Thank you

 

[affected]

Thanks again for clarifying and answering.
To have vague, minor weakness in a hand for 5 years truly does not suggest ALS. I use those words because PALS find they simply cannot use their hands.
Did you take things further looking into arthritic changes?
Muscles tiring more quickly is not a symptom of ALS.
I would honestly thing that the things happening are so likely to have other causes that could be arthritic or systemic, and even age related.

The EMG will detect the kind of changes that happen with ALS in muscle groups you are not even aware of having problems with.
ALS isn't a muscle disease. It starts in the brain and spinal cord.
The likelihood of two ALS specialists not finding ALS is out of the picture. I do feel you need to let ALS go so that whatever is going on can be diagnosed and dealt with.

I would suggest you either talk seriously with your GP about what paths they think are next in the diagnostic process. If you feel truly ignored, change and go to a new GP to get a new opinion. But if you keep asking if they can see now that this could be ALS, you are not helping anything. Be open to what is so much more likely, and maybe it can even be treated or at least managed.
All the very best.