EMG help please.

[Alyoop]

Mywillow.
I know its incredibly frustrateing to not have an answer, despite it being obvious that something is going on. I went through 5 years of it. Numerous tests, numerous neurologist etc. The truth is, the answer was just NOT there.
Neurology is an enigma. Many patients never have their questions answered. There are more undiagnosed individuals with neurological issues, that any other branch of medicine.
My husband is a neurologist and I still went through what you are going through. It sucks, its horrible, it eats you up. Eventually I found some peace realising that getting through each day to the best of my ability, being thankful for every step, every breath, was the most inportant thing. It took years to learn to let it go.
This is not easy for you, I see that. Sometimes I just took a step back, stopped searching and I actually felt better spiritually, which helped me physically. Stress is so very destructive, and not having answers when something obviously goes wrong is VERY VERY stressful.
I wish you well.

Oh and by the way, I have funny feet and they thought CMT, but my NCS was terrific. I did have my second EMG show axonal neuropathy, I developed spasticity and got diagnosed with possible PLS, but everything got better and I have gone from using a Cane to running 4 miles.

 

[Ms. Pie]

****like Aly's post****

 

[TedH5]

You are insulted because someone gave you his honest educated opinion which you asked for? MYWILLOW, I hope you find your answers and as I said I do not think it is ALS aand frankly I hope and pray it is not ALS because I wish no one ever got this disease. However for you to come here and ask questions and then complain about the answers when they do not fit what you want to hear is a little disrespectful to the people trying to help you, many of whom do have ALS.

Good luck in your pursuit of answers and as I said listen to your Docs.

 

[Zaphoon]

Ted,

I like your post!

Thank you!

 

[MYWILLOW]

I am insulted because a total stranger told me , basically, that I was not intelligent enough to understand what I was reading, or what I was being told. I was also told that I was yelling at disabled people, that is not true. The long time people in this community are loyal to each other, and that is understandable. My reaction to the person you say is a neurologist is also understandable: he is the one who yelled, he is the one who insulted me... a total stranger seaking help.

I hope with all the advances made by scientist in the past few years, a cure is shortcoming!

 

[fitzroy]

I've read through your posts and there are a couple of things worth understanding. You might have already been through a lot of previous posts. Wright knows his stuff. He's abrupt because it cuts through expectations and emotion. No insult, just a frank statement in the context of what you posted about your EMGs.

I think I'm a few months in front of you and a year or two behind Alyoop. The difference in my case is that I'm being treated for an extremely annoying chronic condition that hit me about two years ago. I'm on disability as a result. The ALS-type stuff initially came into question as a result of atrophy and weakness in my hands. Nothing I brought up directly. It came into the picture without me calling it.

So, it's still undefined. The operative word is that what's happening isn't anything sinister. But it's progressive. Still not figured out. I work closely with my GP and Rheumatologist. I've been through so many diagnostic processes with so many neurologists. Still not figured out. You know my plan? No more explorations. No more diagnostic procedures. I don't want them. I want to do stuff, deal with my limitations and move forward in life. I've been clear that unless there is a specific reason, I don't want any more referrals or procedures. Next steps are to maintain treatment on my chronic stuff and get on with life.

If neuro stuff stays bad or gets worse I'll get on with figuring it out next year.

I understand the desire to know what's happening, and if it's treatable the sooner the better. Don't ignore your health, but sometimes it's better to accept changes and just live.

 

[TedH5]

I'd much prefer a cure for ALS first...of course that is because I have ALS.

 

[MYWILLOW]

Amen to that! Soon, for all your sakes.
I've read some interesting stuff in the last four years, truley, not all of it is easy to understand because of the jargon used in the medical community, but I will not give up.

Here is something else I found today that is less wordy, between this and my online FB games, I'm having a relaxing day off...hope it improves my mood swings.

You have so many people coming to these sites looking for answers. A lot of us are strangely independent people, it is hard to ask for help, and we are sometime too sensative.

Fibrillations

--------------------------------------------------------------------------------
- See: EMG Menu:

- Discussions:
- fibrillations are action potentials that arise spontaneously from single muscle fibers;
- these usually occur rhythmically and are though to be due oscillations of the resting membrane potential in denervated muscles;
- are typically biphasic or triphasic waveforms that are distinguished from end plate potentials by their initial positive phase and high pitched repetitive click;
- fibrillations & positive sharp waves are found in denervated muscles, but may not appear for three to five weeks after the nerve lesion;
- seen most often seen in neurologic lesions affecting motorneurons, spinal roots, plexus, or peripheral nerves;
- remain until nerve becomes reinnervated or the nerve becomes fibrotic;
- fibrillation potentials alone are not diagnostic of denervation, because they occur in primary muscle diseases such as polymyositis and muscular dystrophy;

- Fasiculation Potentials:
- fasciculation potentials are caused by the spontaneous discharges of group of muscle fibers representing a whole or part of motor unit, usually producing
a visible twitching in the muscle;
- fasciculation potentials most often occur in disease of anterior horn cells;
- commonly occur in:
- ALS;
- progressive spinal muscular atrophy;
- polio;
- syringomyelia

When I first started reading all this stuff I thought what was happening could be that syringomyelia, a cyst on my spinal cord, which would fit in nicely with my disc issues. Unfoutunately for me an MRI ruled that out.

 

[notme]

MyWillow,

Wright didn't say you weren't intelligent at all. He said you weren't understanding what you were reading-two totally different things. A neurologist spends upwards of 12 years to learn their specialty. You can't expect to be on the same level of competence in a few weeks or even years of reading.

Part of your issues,, per your post, is the C8/T1 nerve root. Has an MRI been done of those areas? (The C-spine and the T-spine)

There are many types of neuropathy, as you've discovered. My suggestion is to start back with your GP and ask for a specialist in neuropathy. Some types are treatable, some just are not.

If you're especially concerned with ALS-then look at the ALSA and see if you can find a specialist in your state or in close proximity.

The problem with ALS is that it can mimic many conditions. Your abnormal NCV is a good sign that something other than ALS is your issue. In ALS, the NCV is not affected. It's generally normal.

I'd be searching for answers, too, but getting hyper-sensitive here when someone explains you're not understanding the material you're reading isn't helping you at all. Wright tried to give you reassurance, and the only thing you took from his comments is that he thought you were not intelligent? Really? Read his reply again.

He's the only one here that is really good with EMG information--he should be, as he teaches it--but most of us that have been here a while know that all we can do is try to help point you in the right direction.

To do that, we can only tell you that if your case is complicated to three neuros--it's even more so to a group whose only experience, for the most part, is with ALS.

You mentioned your doctor started again when something new popped up--believe it or not, that's a good thing. It can be dangerous to assume that everything going on is one thing. Very often it simply is NOT just one issue, but several.

I hope you find your answers--but please know that not everything is fixable, I've found. Some things we just have to learn to live with. What did the last doctor that said it was complicated want to do for the next step?

 

[patricia1]

You should ask your GP For neurontin.It may help you get on with life

Your lucky you have neuropathy .And not ALS.

Pat