Doctors have found neuropathy in my legs...is this an ALS symptom?

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JEB1979

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Hello all,

I began posting a few months ago after getting constant fasciculations in my legs. I was living in Asia at the time, and recently moved back to the US. I had started to relax about my symptoms since they had subsided somewhat (I still have fasciculations in my calves, bottom of feet, and other parts of the body, but they don't seem to be quite as constant/strong as they used to be), and my EMG had come back clean.

Since I moved back to the US, I went to a doctor to get a new prescription for my hypertension medication, and he did a thorough check-up. When I told him about my symptoms, he decided to schedule another EMG, this time not just with the needles, but also with the electrical conduction thing they do.

The results were that I have neuropathy. I had pretty much gotten over my worries, and now they're back in full force, especially since I've been having trouble with my left leg the past couple of weeks. I had just chalked it up to uncomfortable shoes, but now...

Am I worrying over nothing? Is neuropathy a symptom of ALS? I've read conflicting information.
 

vickim

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I have neuropathy in my feet and I don't have ALS.

I have mitochondrial myopathy which is part of the MD family.
 

JEB1979

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Do you have fasciculations well as neuropathy?

Was anyone on this forum diagnosed with ALS with an EMG that detected neuropathy?
 

vickim

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Yes but I don't worry about them, I take medication for that and the neuropathy pain. You should ask the doctor if there is a correlation between the EMG and neuropathy.
 

JEB1979

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Well, the doctor said that the EMG showed her that I had neuropathy. I asked her if it was ALS, she told me if I had ALS, there would be fasciculations. I told her I DO have fasciculations. She then went down a laundry list of stuff I know I don't have (in fairness, she's not my regular doctor, just a physiatrist who was assigned to give me the EMG). Diabetes, thyroid problem, vitamin defiency, folic acid problem...those have all been ruled out by blood tests.

I thought I was past all this, now I'm starting to worry all over again.
 

vickim

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I think you should stop worrying, it will make the twitches worse. Just relax and talk to your regular doctor.
 

vickim

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Post went to mod. It will show up later. Sorry
 

JEB1979

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I think you are right that the stress is making my fasciculations much worse. Either that, or I've been much more conscious of them since being told about the neuropathy yesterday.

I've been reading up (which is probably not a good idea since I have two weeks until my doctor's appointment) and some sites say that neuropathy is sometimes confused with ALS, while others say it may be a symptom of ALS. I don't know which is correct. Does anyone here have some more information or knowledge about neuropathy?

Is neuropathy what people refer to when they say they got a "dirty" EMG?
 

vickim

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My emg was abnormal, which means for me neuropathy. Neuropathy can be from numerous problems, like diabetes, pinched nerve and mito among other things. You have 2 weeks til your appointment, so you can sit and fester about this or you can relax, stop looking up things and wait.

I know how hard it is, but there in not a thing you can do about it and it is not going to change the outcome, so take the high road. Relax and enjoy what you can. Write down questions you have and get the answers from the people trained to answer them.
 

hjlindley

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Several things here. EMGs are remarkably operator dependent, which is why most of us go to an ALS center for diagnosis. I've had neuropathy in my right leg for 30 years simply because it's an inch longer than my left. The pattern they're looking for on the EMG to diagnose ALS is called deennervation/reennervation. It's remarkable in that the large nerves to the muscles are not firing and the small ones are.
Many things can cause neuropathy. Good luck to you.
Hollister
 

JEB1979

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My fasciculations are pretty constant and haven't really changed since I first noticed them a few months ago. If anything, they've gotten a bit worse, as they now occur on my tongue occasionally, which they didn't before. I had tried to ignore them, as many people in this forum had advised, and my doctor had done a physical examination and found all my reflexes to be normal. Then I moved back to the US, and my new doctor was concerned enough to order an EMG, which has now found neuropathy, which has me scared all over again.

I'm just really, really worried, I guess. My aunt passed away from this, but I figured the chances of it being genetic were infinitesimal so I never really worried about it until all these symptoms started popping up this year.

It's going to be a rough two weeks, and even when I see my doctor October 11th, he'll just refer me to a neurologist, so who knows how long it will be until I get some answers.
 

vickim

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Yes it may be weeks, months or possible years, just remember you can't let this take over your life and forget to live. For every minute of fear and anxiety you will lose 60 seconds of happiness and joy. Be patient.
 

JEB1979

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Well, it has already been four months and a half since I first noticed the constant twitching in my calves...I am just living under a cloud of worry. Currently studying for my teacher's certification, but I wonder if I will ever even get a chance to use it at this point.
 

vickim

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It took 5 years to get my answers. Please don't think the way you are thinking. Study hard and get that teacher's certificate. What a noble profession and you should be proud, excited. You will be a wonderful teacher, you will have a first hand view of people having differences and disabilities. You will be a shining example of overcoming fears. I see a bright intelligent person with a bright future.
 

ysabel

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i understand being worried trust me i got worried about some term i heard from my notes which was by the way accidentally disclosed to me by a third party, i went on a dr google fest and found several answers. huge mistake! dont do this you will drive yourself nuts!
everybody i know twitches my daughters twitching can be seen from across the room and she doesn't have any neuromuscular disorder .
however i wish you the best and hope you get good care..
 
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