Nervous about my hand

[Tedster]

Hello, thank you in advance for reading and for any observations.

I am a 53-year old man, generally in good health, fairly fit and active (although 10-12 pounds overweight), with no history of ALS in my family.

I have a birth defect, my left arm is 8 inches shorter than my right, and I have no thumbs on either hand. It's never prevented me from doing everything an intact person would do, I've never had any limitations.

I admit to being a hypochondriac (a form of OCD), and have periodically had cognitive-behavior therapy to deal with it.

However, my hypochondria has always focused on imaginary symptoms. This one is real.

Last Tuesday I was fine, there was nothing wrong with me that I was aware of.

Wednesday morning I noticed myself fumbling a bit buttoning my shirt.

Thursday it was much more noticeable, and I realized the grip of my left hand was suddenly quite weak.

By Friday I could not hold anything in my hand, and could not pull up my jeans or even my socks, and could not button my pants (still doing my shirts, but it takes longer as I am doing it with just one hand.

I feel like I'm commanding my hand to do things like bend, etc. but it's just not happening. When it does bend there's an odd, uncomfortable feeling that I can't quite describe. It is pain, but not unbearable, just uncomfortable. I can hold small objects like the soap and my deodorant, but only for a minute or so, and it takes so much effort that I can't then actually use them the way I intended. Essentially, the grip of my four fingers is super weak all of a sudden.

I went to my GP Friday. He did a brain MRI to eliminate stroke, and I will have a neck and cervical spine MRI in a few days. He keeps saying he thinks it's an issue in the neck, causing a problem with a nerve in my arm. I asked about ALS, and he said it doesn't sound like ALS because it was so sudden, and ALS is much more gradual. However, he did say if the neck MRI doesn't show a pinched nerve I should then see a neurologist.

But now I'm wondering if it was slowly deteriorating and I just didn't notice or compensated unconciously. However, it does seem strange to me that I could go in 48 hours from being completely unaware to not being able to do anything at all with my fingers -it does seem very odd. I should say the palm of my hand feels fine - I bought a few groceries yesterday and couldn't carry the bag using my fingers but just put the weight on my palm and had no problem. The rest of my arm also feels fine.

Thoughts? Could this be ALS? From what I read online it's the classic first symptom, while the symptoms of a pinched nerve are numbness or a pins and needles sensation, which I do not have.

I am beside myself with worry. I am single, and have no children or siblings. There is no one around who could take care of me 24/7, which I know is what eventually happens with ALS.

 

[Nikki J]

I agree with what your pcp said about the sudden onset. Yes that fumbling is common with hand onset but to go so quickly to the degree you describe plus pain sounds like something else. It seems your pcp is taking this seriously and has an appropriate plan. Remember even if the next mris is negative there are a lot of things it could be As an example if the neck was ok that says nothing about all the things between the neck and the hand. It would be more consistent with the onset and far more common to have some localized nerve or muscle disease but it may take time to get to the answers

 

[Tedster]

Here is my update:

I had the MRI Friday, have not heard back from my GP's office about getting the results.

I had the MRI burned to a CD and took it with me today to the neurologist at Hospital for Special Surgery in Manhattan. The ALS website listed them as one of the 2 "excellent" centers in NYC, and I'm familiar with them from a back issue when I was in my 20's. The dr. was the last on the last, she's young and clearly their newest recruit. But she seemed very thorough and spent a lot of time with me, testing reflexes, strength, my walk, etc. She said outright she does NOT think it is ALS, and seemed surprised that I asked.

She also looked at the MRI of my neck and told me she thinks it definitely is my neck, and that I should see a spine surgeon for surgery soon, as she thinks it's too far gone for PT. She also did an EMG and said it is consistent with what she thinks about my neck, she said there is below normal response on the left side, but she thinks that is actually my personal norm due to my abnormal physiology.

I burst into tears when she said no ALS. I asked her three times and she was firm, and reminded me she is in the ALS clinic twice a week, did a two-year residency or something in it, etc. I liked her a lot, and desperately want to believe her, but she looks so young, and for the past few days my calves feel like they're cramping, which scares me. I really have no pain or numbness, which is what I associate with a pinched nerve, just the weakness in my left grip.

Is it possible she's wrong, or am I just on the fast train to crazy town?

 

[Nikki J]

They are not going to have an incompetent attending there and someone who has gone through fellowship is highly trained and educated The diagnosis makes perfect sense with your symptoms and ALS did not as your primary told you.
Perhaps the website is not up to date and your doctor is not listed yet or did you see Dr Leung? She is far from a new recruit and very qualified and experienced

Congratulations on not having ALS. Do not let this make you crazy!

 

[Tedster]

Thank you, Nikki.

I did not see Dr. Leung. This is a new doctor named Dr. Erin Manning, who is so new she's not even on the website yet (and I was able to get an appointment on two days notice). I was very impressed with her thoroughness, and she seemed so kind, as well. It's just her apparent youth that threw me, and I freely admit my OCD may be kicking in here, as well.

Thank you again for your generosity of spirit.

 

[Nikki J]

Oh I see. I saw her on the website too. She did just finish her fellowship there which means she must be the best of the best to be invited to stay as an attending. She is a known quantity to them obviously as she has been working with them. Don't worry she has had approximately 7-8 years of neurology experience after medical school

 

[Atsugi]

Just in case you need a second opinion:
Nikki is really smart in these matters. Trust her.
I would trust Dr Erin Manning. Neurology specialists are really well trained.
The EMG is the gold standard test. It would pick up ALS long before any symptoms appeared.
You're clear of ALS, Tedster.
--Mike

 

[Tedster]

Me again. I'm so sorry. I'm having trouble letting this go.

The past couple of days I feel like I'm having fasciculations, mainly in my calves. I didn't actually see anything until this morning, when I saw a little movement. It happens when I'm at rest, sitting or lying down, I'm thinking maybe I went to the dr. too early. She did mention that my left arm, where I have the weakness, has lower readings than their norm on the EMG, but chalked that up to my unusual anatomy (see earlier description of birth defect). and the MRI defintely indicates neck issues that are completely consistent with my hand weakness. I feel like whenever I'm about to put the fear aside this pops up again, and I saw another thread where someone talks about perhaps having very slow onset, and feeling fasciculations, and it all starts up for me again.

Thoughts?

 

[affected]

twitching means nothing, nada, zero

 

[Nikki J]

Tillie is perfectly correct. If you are reading other threads in the DIHALS subforum you are doing yourself a grave disservice. The fears or surmises of other undiagnosed people provide no information and will only feed your fears. I expect you have been referred to someone ( a neurosurgeon?) for your neck. Forget about ALS and focus on your upcoming appointment instead. You should be researching possible surgery or other treatments not looking back at ALS when a neuromuscular doctor has cleared you of it

 

[Atsugi]

>>fasciculations, mainly in my calves== I have twitches in my left arm nearly continuously. But I don't have any disease at all. They're just amusing, a reminder that my nervous system has been well used over the years.

>>maybe I went to the dr. too early== No. The EMG would pick up ALS well before symptoms are apparent.

>>whenever I'm about to put the fear aside this pops up again== THERE'S YOUR PROBLEM! As Nikki said, you need to UNbookmark this site. Remember, you become what you focus on. Do you want to be sick? Maybe the doctor needs to treat you for anxiety.

You had advice from the best ALS experts in our community. I suggest you take it and go and I wish you the best. --Mike