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JasperD

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Here's my story.
In January of this year I started having tingling and burning in my arms and legs. Doc sent for an EMG in Feb and was normal. Brain MRI was also normal. Doc decided it was longstanding elevated but not diabetic level sugar levels. Started metformin. Also Lyrica to mask the tingling and burning. In May saw a neurologist and he claimed I had small fiber neuropathy. In May when I saw neuro I had developed some twitching in my right triceps. Neuro didn't think anything of it. Had a follow up yesterday with the neuro and my arm twitching has gotten worse three months latter. I have no weakness or atrophy. Just tricep twitching and the before mentioned burning and tingling in my arms, hands and legs.

Neuro now wants to schedule another EMG and NCS along with spinal MRI

I'm scared to death. Does he suspect I have ALS.
Any advice would be helpful
 

dalvin

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Doubt it. The tingling and burning points away from ALS. Lots of other things can cause it. Try to relax and let the doc figure it out
 

Nikki J

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Well of course we can not say what your neuro is thinking What did he or she say about your exam and about the plan? There are many many things that those tests would look for so unless you had some abnormalities on your exam ALS does not seem like it is what he or she is looking for. No weakness and no atrophy are good. Twitching is non specific and the burning etc seem consistent with your previously diagnosed sfn. If this is making you very anxious and you did not ask about what neuro is looking for call and ask if the appointment is too long to wait.
 

MaxEidswick

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Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 

JasperD

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Sorry Max. I understand the not being anxious part. working on that. Just thought someone with more ALS experience than me would have an informed opinion. Where are these stickies you refer to?
 

GregK

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the stickies are the forum topics that always 'stick' to the top.
See attached, which is a bit old but should give you what you need.

> EMG in Feb and was normal
this is good. Ours are not 'normal'. If your EMG re-do is still good, forget ALS.

Stop obsessing over ALS until you have more info. If not you will need a shrink more than you need a neuro.
 

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Atsugi

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Just to recap:
...tingling and burning in my arms and legs. Has nothing to do with ALS
...EMG in Feb and was normal Good, it's not ALS
...level sugar levels. Irrelevant to ALS
...small fiber neuropathy. Good thing. It's not ALS
...twitching in my right triceps. Neuro didn't think anything of it. Neither do I.
... no weakness or atrophy. Then it's not ALS
...another EMG and NCS along with spinal MRI. The doctor is continuing to test you and make money from your insurance agency.

Comparing your symptoms to ALS is like comparing apples to concrete.
 

JasperD

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How common is it for a normal EMG in Feb to change to an abnormal one in Sept?
 

affected

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Jasper honey, just try to chill out now and wait for the EMG and stay away from here and Dr google.

The only thing you can control is how you live your life.

I'm sorry for what you are going through but we are actually dealing with a terminal disease here and can't babysit anxiety. There are forums for health anxiety.

September isn't very far away, and several very wise people here have clearly told you that your symptoms do NOT sound like ALS. Please do not keep asking us to tell you otherwise.

Wishing you the best
 

Dusty7

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"Just thought someone with more ALS experience than me would have an informed opinion." And that's a big part of why we're here.

Nikki has way more experience with ALS than any non-doctor should have. Read what she said again and find comfort in what she said. If still anxious, follow up with your neuro as she suggested.

Mike (Atsugi) also has had very up close and personal experience with ALS. Read his reply again and relax.

Tillie is in that boat also and she too clearly says "your symptoms do NOT sound like ALS."

If you came here for informed opinions, you have received them. Your symptoms do not sound like ALS.
 

MaxEidswick

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>#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!
 
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