Sorry if this is long, I want to provide background to be as informative as possible.

Background, when I hit 18 everything changed for me. My back started to degenerate and I herniated a few disks, I had knee pain too. I started gaining weight. I lost energy. I developed "floaters" in my eyes and at 1 point, optic neuritis for which I was given a short course of steriods. I had very bad, constant diarrhea (I lost weight during these periods).

Each thing was attributed to separate causes. Cheerleading and horseback riding for the back and knees, weight gain and fatigue to hormones and Polycystic ovaries and the floaters were classified as PVD (posterior vitreous detachment). Diarrhea was actually misdiagnosed as Crohn's until I saw a new doctor 2 years ago and we discovered it was really just severe lactose intolerance. All the rest were dismissed by doctors basically.

So now I'm 30, overweight with no success dieting and have had 2 micodiskectomies in my back.

Last April I actually had a lumbar disk fragment and now my achilles tendon on the left side is weak and I have a drop foot because of it. A year ago started with "flashing" in the eyes. Like a strobe light in the corners of my eyes. It was only at night, and only when looking at something red or orange. Wierd huh? Now, it's all the time in my left eye and intermittent in the right eye. Saw 2 opthamologists and both still say it's PVD.

A few months ago, I had really back neck pain on the left and had an Xray, which of course was negative. My PCP said it was muscle strain and gave me Flexeril and Iburofen. It eventually went away.

About 6 weeks ago, I noticed my big toe on my left foot was twitching. Moving back and forth by itself. Then within a week, I started to feel a like someone was plucking on my sciatic nerve, a deep "twang-ing" feeling and a vibration all the time- like my foot was in on the floorboard of a car with no exhaust. The muscle fasiculations are visible to the eye in my leg, you can see my calf and buttocks and thigh moving. My toe will move so much, I'll try not to put weight on that foot because it makes me unsteady. I went back to my surgeon and we did another MRI showing the disk L5-S1 on the left is bulging again and to add to it, the L4-L5 on the right that I had operated on in 2007 is herniated again. He proposed an epidural steriod injection which I did not get because then the same thing started happening with my left thumb. So now the thumb is going and the toe/leg are going. Then I got really stressed out at my 2.5 year old and my neck sort of spasmed, although it didn't hurt like a muscle spasm, but it pulled my head down and to the left. Luckily that hasn't repeated since.

I had blood work, all normal besides an elevated C-reative protein, which is always high when they test it on me (and the rheumatologist said it must just be "normal for me"). Lyme negative, other tick bornes like Ehrlichia and babesia negative, normal chemistries, normal CBC, normal sed rate. I've had my ANA tested multiple times in the past and its always neg. All autoimmune tests are always neg. like, Rheumatoid Factor and stuff like that. I did have Epstein-Barr last year though. An MRI of my brain w/o contrast was "unremarkable".

I have an appt. on 9/12 to see a neurologist. Hopefully I can get some answers. I draw blood for a living and I can't hold the needle in my left hand anymore, I've had to switch to my right. I just hope it stays on the left for now and doesn't progress to the right or I'm screwed. Especially since the doctors keep blowing me off like I'm some looney.

I hope I can find support here, or similar stories so help aid me, since it seems I've have to push on for a diagnosis.

Thanks,
Carly

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!