Wondering what I should do

[Toto's Dorothy]

Another,

You go og led your symptoms, why did you not bother to look up C5 and C6 abnormalities? Would you rather have the death sentence? And I mean no disrespect. I g'ed it and lo and behold the results below:

C5 controls upper body muscles like the Deltoids and the Biceps (which allows flexion of the elbow and rotation of the forearm).

C6 controls the wrist extensors(muscles like the extensor carpi radialis longus, extensor carpi radialis brevis and extensor carpi ulnaris that control wrist extension and hyperextension) and also provides some innervation to the biceps.

So, why doesn't that fit with the original diagnosis?

 

[an0thermike]

Hi Toto,

I am aware a disc bulge at that level can cause those symptoms. In fact I was hoping my neurosurgeon would tell me just that and alleviate my fears. However, he told me that he didn't believe my disc protrusion could be causing the kind of symptoms I've been experiencing because it wasn't big enough. He didn't think it could be responsible for the atrophy in my hand. I hope he is wrong, but that is what I was told.

 

[Toto's Dorothy]

Surgeons aren't perfect, I would look for a second opinion. My thoughts are this: not always does it have to be ruptured in order to have symptoms. Ie. My body temperature is 97.1. If I even come a tiny bit higher than 98.6, I'm sick. What one body can withstand another might not.

Also, have you or were you the one that mentioned ALS?

 

[trfogey]

In fact I was hoping my neurosurgeon would tell me just that and alleviate my fears.

Here is your problem. You fill your mind with these fears by reading stuff online that has no relevance to your case. Then, you expect everyone you consult to talk you out of your lunatic positions. Why should we do that? Why should anyone here waste any more time and energy patting your hand when what you really need is swift and direct kick in the *ss?

Take a good look at yourself in the mirror today. That's the only person that says you have ALS. That's the guy you need to stop listening to. He's a quack and he's dangerous to you. Get him to stop searching on the 'Net and listen to your real doctors and then you'll start feeling better.

I suspect you'll ignore my advice like you have all the others, so you can continue to mope around and feel sorry for yourself. That is something you seem well-qualified to do.

 

[notme]

it would be extremely abnormal for an EMG/NCV to be normal in a limb that is atrophied. that's weird. And, a neck issue with a disc can cause problems--the fluid from the disc can leak and irritate nerves.

Good luck. But with a normal EMG--it's unlikely to be ALS--which is good for y9ou

 

[johnnyliverpool1]

toto...dont waste yer dollar cos yer wont win..and you already lost...but you is a winner in my book..cos you got charisma and guts ..johnny

 

[TedH5]

I once saw a sign in a Neurologist's office that said "it is carpel tunnel until it's not"...honestly while I am not a Dr what you are describing does not sound like ALS. You have already allowed anxiety and irrational fear to beat you. If a Dr has not mentioned MND to you I am not sure why you would obsess about it...

 

[an0thermike]

Well right now I think it's looking like I'm going to be having neck surgery... I'm worried that I'll be having an unecessary surgery however. I've been to two neurosurgeons now who both think the disc bulge I have could not be causing my symptoms. One of my surgeons has agreed to perform the surgery however, because he just doesn't know what else could be causing them. And I think he really doesn't want to say it's MND.

I know alot of you are saying I'm self diagnosing. But I've been to lots of doctors and none can give me a diagnosis. And I get the strong feeling they also just don't want to give me bad news. I've been having spasms all over my body and I have atrophy in both hands, only pain in one. My hands are both stiff, not necessarily weak, but they sometimes feel that way. When I wake up in the morning I feel miserable. I went to a hand surgeon, A doctor who I really do trust, who previously performed surgery on one of my hands and he's told me he can't find anything apart from the atrophy, wrong with my hands. And he was actually the first person to notice atrophy, not me. He's the guy who recommended I go to a neurologist.

trfogey, you call me a lunatic and I understand why, but I've been to all these doctors and my symptoms are getting worse every day. It's been progressing for about 5 months now. And not a single doctor will tell me whats wrong with me. It's a very hard situation to be in. I'm quickly losing my ability to work and it seems like there's nothing I can do about it.

 

[Ms. Pie]

I'm sorry you're so miserable. Sounds aweful! I haven't read your whole thread. Have you had an MRI on your hands? That's one of the first thing my hand guy did for me which showed nerve damage. I hope you get it figured out soon. If they thought it was ALS they'd tell you. Good luck!

 

[notme]

Ok--an EMG and NCV would show if there was damage from a nerve in the cervical spine. Pain can be caused by leaking disc fluid--that radiates down the nerve root it strikes--but that doesn't cause atrophy.

I don't quite understand--you have atrophy but no loss of function? I have a major amount of atrophy in my left hand and arm now. Obvious to everyone that looks at it--but it also shows up on EMG/NCV studies--and on clinical exam. The loss of function was months before the atrophy. Neurosurgeon won't touch my neck--because HE thinks it's ALS--and ALS doc said to not have surgery til she can figure out what is wrong with me.

My point in that long explanation is no one is going to do surgery unless there is a REASON for it. How could you not notice hand atrophy? It's pretty obvious.

EMG is the gold standard for diagnosing nerve and muscle issues. Very confused.

 

[an0thermike]

The neurosurgeon wants me to do two things before he moves on with the surgery. One, I'm having another way more thorough EMG tomorrow, because he doubts the accuracy of the first one, due to the atrophy. Two, I'm having an epidural to see if it helps with any of my symptoms.

My neurosurgeon has told me two things though, he doesn't believe I have a MND (mainly because I'm too young and the first EMG didn't pick anything up) and he doesn't believe my disc to be the cause the problems. I don't know what I'm supposed to do with that though when I'm quickly losing muscle in my hands and its becoming painful to work. I'm very stressed with all of this and I'm mainly posting here because it feels therapeutic to get these things off my chest. I feel like I'm slowly coming to terms with all of this stuff, but right now it's new and very hard for me.

 

[trfogey]

Dude, you do realize that thinking that your doctors won't tell you what's wrong with you because they don't want to tell you that you have MND is a pretty crazy notion, don't you?

What kind of work do you do that stiffness and soreness in your hands and a negligible loss of pinch strength would prevent you from working?

 

[an0thermike]

It is crazy, isn't it?

I do visual fx, which is mainly programming and 3d design on the computer. In my industry people who work fast are valued. At this point it hasn't stopped me from working, but it definitely slowing me down. It's becoming very painful and tiring to type and I'm just worried I won't be able to keep up anymore.

 

[trfogey]

I hope that you get some better and (especially) more specific answers from your tests tomorrow.

 

[913mommyof3]

While my husband was in the process of being diagnosed with ALS, I developed an eye twitch. It was driving me nuts! My eye doc told me it was probably stress. It eventually stopped. I can tell when I'm stressed because my eye starts twitching again! You are going to have to find a way to calm down. No matter what is wrong with you, stress doesn't help anything. I found that xanax helps me a ton! Good luck to you!