can you relate

[bobbaker]

I just want to say thanks to all of you for your openess and honesty. I have read everything and now have a better sence of things to ask the Doctor.

I went to the urgent care for what i thought was a broken bone or torn tendon in my right hand. I'm a father of 10 and 6 year old boys and love to wrestle and cary on with them. I also have an 8 week old daughter who I love to carry around the house and jump up and change her diaper. So i'm thinking i've done something to my hand. They take xrays and the Doc walks in and says they were negative. Then he examines my hand and said you have atropy below your thumb on the palm of your hand. He demonstrated to me how the skin was empty and the muscle was gone. He explained to me about the nerve that was part of the thumb and where it is up the arm. this would be the nerve and muscle that is very painful. He did a strength test and well i knew it was way off because i've been afraid to pick up our 8 week old baby. I'm having trouble changing her diaper. He asked me many questions, all of which i've since read on the various ALS websites and many of which the answer was yes. He then looked at my left hand below the thumb and the atrophy was there too but not as bad. He ordered blood work and urine test.

I'm not looking for a diagnosis from any of you. We will leave that for the docs. The nerve testing is Aug 12. The Lab folks said they are looking for ALS. What I was wanting to know is do any of you have stories like mine. I knew nothing about ALS before seeing the doc. Never in a million years thought about it at all. Just curious if any of you are like me. Thanks, Bob

 

[Ms. Pie]

The lab folks had no right to say anything about what they thought. I'd let your doctor know what they said to you. They don't know anything. The turds.

 

[Ms. Pie]

P.S. you can't "find" ALS. You have to go through a lot of testing to eliminate everything else before ALS is considered. How dare those lab folks say anything like that to you! Really gets me fuming!

 

[bobbaker]

I know.... I have a good understanding of the diagnosis process. was just curious about peoples stories

 

[notme]

HI

First, ALS won't be found in any lab test--there just isn't one for it, unfortunately (would simplify life a LOT)

Now, to your symptoms--yes, your story is all too familiar, and much like mine--my symptoms were in my hand and that is where the atrophy is--but as I've worked in the medical field most of my adult life, I knew it wasn't normal. The docs pretty much blew me off once a stroke was ruled out as I had a lot of weakness in that hand-- until the atrophy became obvious. It sounds like your atrophy is minimal, which is a good thing. In my case though, I didn't have any pain along that nerve path at all--just the weakness and atrophy (only pain in my hands is from severe cramps and spasms) So the fact that you have pain along that nerve path is also a good sign.

Like Ms. Pie, the first neuro did the NCV and said mild carpal tunnel was the problem The neurosurgeon and new ALS specialist don't agree.

And, now the good news. That area (the thenar and hypothenar) areas are controlled by the Ulnar Nerve. It is entirely possible you've got nerve damage to that nerve which would cause the weakness and the atrophy if left ignored long enough. It's possible--so don't give up on it being something fixable. Spondylosis (I might have spelled that wrong) is also possible.

It is good that the urgent care set you up with a neurologist--as that's where you need to be-- but really--even with atrophy--ALS is only one of many possibilities.

I've had symptoms and atrophy in both hands--left much worse than right for more than a year. I am not diagnosed with ALS, though, so don't give up hope.

Your doctor will do an EMG and NCV. Those tests will tell them if there is a pinched nerve (either the ulnar or one from the neck) Again--think positive. There are a lot of different things that could be going on.

The doctor has to write a code on testing for insurance to pay for it--and Ms. Pie is right--they shouldn't have even mentioned ALS to you.

With bilateral atrophy is is a possibility--but it's certainly not the ONLY possibility.

Hope this relieves your mind a bit--please let us know how your EMG goes--but as Ms. Pie says: Every day wasted is gone forever.

Worrying that it's ALS is wasting precious time you can be enjoying with your young family. It will be what it will be--for now, just believe it's something fixable unless you're told differently by a trained neurologist.

Edited again to add this: It can only be ALS when it can't be anything else (compliments of Zaphoon)

 

[Ms. Pie]

I first noticed weakness in my right hand fingers in that they lost some strength. I didn't think anything of it. Then like a year or so later I noticed weakness in my legs. No pain anywhere. Just weakness. So I went to a neurologist friend, not mentioning my leg weakness, just hand, and it went from there. First EMG on my right arm and hand said Carple Tunnel. Since I had no pain my friend neurologist said that wasn't the problem and sent me to a hand guy. He ordered a MRI which showed nerve damage in my hand. I never had West Nile or any injury to my hand, so on to the 2nd EMG.

This Neurologist sees the results of the more complete EMG and blood tests and says ALS. I got a 2nd opinion with EMG and exam. She said ALS. I didn't like either of the last two Neuros (terrible bed side manner and lack of caring) and found a new neuro who thought I should be further along in my deterioration given the length of time from the first symptom onset so he ordered another EMG just to make sure. He also ulitimately said ALS.

Lab people are NOT supposed to be giving their opinions about what they think. They're not qualified to tell you anything and you should disregard anything they say. Wait for your meeting with your doctor to ask any questions about what it might be.

 

[bobbaker]

rest assure i will get a second opinion just as you good folks have recommended. I realize its a long process of eliminating things. I've survived alot in life and realize its key to talk to folks like you and be open about whats going on. 24 hours a day my friend. Thank you for responding

 

[Alyoop]

Your atrophy could be caused by all sorts of problems, so don't get too worked up about ALS so early on. I have an aunt with a withered atrophied, weak and useless hand, who does not have ALS, but they have no idea what it is. It's horrible going through the diagnostic process, especially as it lots of tests with waits for appointments. Makes a person either very patient or a little crazy hang in there, you will be in my thoughts and prayers

Aly

 

[Ms. Pie]

Or patiently crazy Aly Pie!

 

[Alyoop]

Yes, I thought I had developed patience after 3 years, but in the last year it's definitely crazy now.

 

[notme]

Crazy is mine, neither of you two can have it! it's MINE and I'm not sharing!

Aly, I didn't know your aunt had an atrophied hand. They can't find the reason? That just sucks ;(

 

[Alyoop]

her hand is incredible. I met up with her in the UK. Last year when I saw her i got her to get her drs letters and emg report. They had been ? ALS, not that she knew, but nothing at all was conclusive. She is a heavy drinker and smokes, so could be paraneoplastic or something hiding.
It just highlights, that none of these issues are as straight forward as we believe. Many unknowne and questions that cannot be answered even by the experts........thats why we all go ga ga We can share the crazy if you want?

 

[bobbaker]

Sharing crazy is fine with me

 

[lydia]

It could be that the lab techs were just reading the notes on the script. I know my first NCV/EMG had "rule out MND" written on it, despite my neuro not saying anything about that particular possibility to my face.

 

[bobbaker]

thats what i was thinking too