Welcome, Carly!

It seems pretty typical of neuropathies to be misdiagnosed for years. I went to a neurologist after several years of increasing hand weakness, fasciculations, twitching, and tremor, and it was all explained away as other, benign things. Ha. Five years later I woke up with a thumb that suddenly wouldn't extend, getting everybody's attention, and it turns out I have multifocal motor neuropathy (MMN). Could be much worse; I had about decided that I had ALS.

Anyway, the neurologist you are seeing will probably do an EMG which will at least provide some information about the state of your nervous system. Don't be afraid to ask questions and don't be afraid to get a second opinion. We are immeasurably lucky to have the Internet now, which helps so much in finding out things for ourselves (always remember to be aware of the reliability of your sources, though!)

This forum is a great place for information and support. Don't be a stranger, and keep us posted about your progress.

--twitchyfirefly
*admin edit*

Thank you twitchyfirefly (love the name BTW)!

I'm incredibly grateful that I am in the medical field and help do some research and not freak out too badly. Plus, my PCP is pretty good about ordering tests I request, although both he and the spinal surgeon did not want to order the EMG. I'd rather have it and go to the neuro with those results, you know? Like a nice little Christmas package.

I can only imagine how bad it could be for someone who isn't in the medical field. Needless to say, I'm still anxiously awaiting my neurologist appt. I was lucky to get in with someone so quickly.

Thanks for the reply!

HI njmama

Despite undergoing more EMGs in six months than the average person sees in a lifetime, I am not a total expert at these things; but both my Utah neuro and the Mayo neuro did their own EMGs. This, after the local spine guy had done an initial one. Seems they all want to see things for themselves. And perhaps all EMGs are not created equal. So don't be surprised if you get that pleasure all over again. For one thing, the first one might not cover specific stuff the neuro might want to look at.

I can also say that the Mayo didn't even look at the MRIs that I took with me--they did 'em all over again. And the EMG they did lasted for *four hours*. Can't say they're not thorough! Apparently MMN has some unusual EMG features.

Fasciculations are often an indicator that something is awry with the nervous system, so I think you are doing the right thing in going to the neurologist. Again, don't be afraid to ask questions or seek a second opinion. The first neurologist I saw (in 2005) was the one who assured me there was nothing wrong. I clung to his opinion for five years, until I had to admit there was indeed something going on. If I'd pursued it, I may have been able to prevent the loss of function in my left hand. Or maybe not.

I actually have 2 appts with 2 different ones because the "best" neuro over here in NJ wasn't available until the end of November. So I made that appt. and then found someone to see me sooner who's in Philadelphia. If I don't like what she has to say, I already have that 2nd opinion lined up LOL

Today I started feeling that tingling in my right arm and now my pinky toe on the left foot is moving by itself. Before it would stick out and I called it "trigger toe". And I noticed spasms in my *ahem* no-no special place. Almost like an orgasm, but minus the pleasure!

I only had 1 EMG in my life, way back when my back first started hurting really badly. It wasn't painful, but unpleasant. I don't think anything could compare to the pain of the fragmented disk *shudder*

I wondering if this could all be related to my back surgeries or maybe the spinal block I received for my c-section? I have been reading about spinal myoclonus. I think I'm going to insist on a full MRI of my whole back. So far they've only done lumbar and my brain (without contrast, too. why, i don't know, seems kinda stupid to me). But it's weird that it would wait 2 years to really manifest like this and now it's like a steamroller.

Thanks for your help and support!

I was just diagnosed with MMN at the university of Utah and like many I thought I had ALS. I am currently looking for finacial aid as im uninsured and the MRIs and EMG as well as labs have left me in debt already, and I have been told my treatment is 20K a month. Any help you can give I would Appreciate.

The Affordable Care Act (Obamacare), while it won't take full effect until 2014-- assuming it survives political vicissitudes till then--will have help, including subsidized premiums even for those up to 3x or 4x poverty level, and no refusals due to pre-existing conditions.

In the meantime, there is the high-risk pool which is in effect now, and perhaps Medicaid. See http://www.healthcare.gov for details; plug in your state and answer a few questions to get more personalized information.

...in my feet especially and toes.

It seems, my twitching is worsened with movement.

It is believed I have a sciatic nerve issue (compression somewhere) that may be causing this!

Sure hope you can get some answers soon. I am searching for them, as well!