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minnguy

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Hi all - I've read your stickies on symptoms multiple times over the past several months and have pretty much perused a large amount of threads looking for answers. But, I figured it is time to ask the questions here about whether this is ALS I'm experiencing?

Symptoms started with back pain and pin prick sensations around rib cage in May. The pin pricks eventually subsided and turned into twitches round my lower rib cage and under my sternum. Also experienced weird stiffness in my toes and fingers on left side. Went to neuro in June thinking MS and MRIs and EMG of left side were normal, spinal tap normal as well.

Went to second opinion at end of July. Mildly brisker reflexes on left side were noted. During August I developed tightness and spasm type feelings in my throat. Pain while swallowing and pain in throat like cramping muscles. Had swallow study done which was normal for function but showed I had small hiatial hernia (weak diaphram?). August 31st repeat EMG on left side limbs was normal. I only had minor fasics at this time in my calf and foot. I've noticed weaker 3rd and 4th toes on my left side and more recently on my right side.

Met with Neuro again and had brisker reflexes now on both sides but he said clean EMG means no ALS. The weakness in my toes is very subjective for a neuro to measure but my left calf is smaller than the right and the concern is that is where it has been twitching for the most part. The twitching is 90% in my left leg but I have it in my face, neck, and tongue as well and this has increased recently. It is also on the right side limbs more consistently as well. Hands have been generally good aside from cramps and stiffness causing typing issues.

In the past couple of weeks I've experienced pain while inhaling and exhaling and especially when laying down. Last week at doc my oxygen was 96. I've also begun experiencing stiffness and muscle aches throughout my body and specifically in my throat area (at the back of tongue), diaphragm, and legs.

To add on so you can tell me I'm crazy just like the rest of my family....I've had a Mayo Neuro tell me I'm ok and then then next day a former ALS clinic director tell me we have to wait and see.

Does anyone have any thoughts if I should be concerned?

Awaiting bulbar EMG next week and Mayo ALS specialist appt two weeks later.

Another question that might help clarify. If you have fascis that don't happen during your EMG the EMG should still detect ALS, that is my understanding. However, the question of "too early" has been raised and I've read, symptoms should appear after EMG would be able to detect them. What symptoms? Weakness only or actual fascis?

I'm sure I'll get hammered for saying "feel" or "pain" in my post but doesn't muscle weakness become painful if the weak muscle is strained for use? Or if it is mildly cramping or spasming? (for me the diaphragm and throat area)

Thanks.
-DJ

By the way I'm a 36 yr old male.
 
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minnguy

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I should add that the twitching is constant and has been for the last 6 weeks. I pretty much can't go 5 seconds without something twitching.
 

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I don't think you're crazy but I don't think you have ALS. I imagine your upcoming appointments will add weight to that statement. If this workup shows no further clinical abnormalities, I would focus on addressing symptoms with PT, massage, breathing exercises, etc. and see how far that takes you.

Best,
Laurie
 

minnguy

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Thanks Laurie. Your number one reason for voting not ALS? I'm curious.

For further clarification, the EMG would pick up ALS if the twitching I was experiencing was in it's infancy and caused by ALS?

I've never had twitching like this before from anything ever. Especially that focal. My B12, B6, magnesium, vit D, etc all all recently measured and in high normal ranges so the differential diagnosis is a mystery.

At the time of the symptom start my ferretin was 390 which was higher than ever been. At least I speculate that Iron levels in the brain have a lot to do with the onset of these neuro issues. Or at least ferretin as a marker of inflammation.
 

minnguy

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I should add that my left leg has been cumbersome and heavy throughout this whole ordeal. Toes feel like they are just floppy and stuck in my shoes actually. I'm able to stand on my toes.

Curious if others have opinions too?

Also, is the neurologist community just not brave enough to say you might have ALS if you have "early" symptoms but a negative EMG?
 

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My EMG was abnormal way before I had twitching, there was no heaviness or floppiness in my foot it didn't feel different I just couldn't go on tiptoe no matter how hard I tried.
My EMG also shows abnormality in areas where I have no weakness or symptoms yet this includes the bulbar area. Pin prick sensations and pain aren't early signs.
There is obviously something causing your problems, be open minded with your doctors and ask them what they think is causing the problems. Don't try to fix too strongly on one idea.
Good luck Wendy x
 

minnguy

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Thanks Wendy. When you say way before like how long? Weeks, months etc?
 

KimT

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When you go back to Mayo ask them about cramp fasciculation syndrome.

My EMG was abnormal a year before twitches. Also, without other abnormalities on an EMG, fasciculations are ignored....that's how common they are.
 

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Several months
Wendy x
 

minnguy

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Thanks Wendy. Has anyone here been caught my the hyperexcitability phase of twitching before EMG showed abnormal? Meaning two months of twitching or so before anything shows on EMG? So this still confuses me. Some say twitching before EMG some say after muscle weakness and abnormal EMG. Is it just when people perceive the twitching that causes the difference in opinion?
 

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You've had two EMG's in the last 4 months, both were normal. They weren't done too soon.
 

minnguy

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Thanks lixen. Sorry I should clarify, I didn't have twitching until a week before the second EMG. The first EMG was done as a rule out precaution back in June when thought MS or some other PN autoimmune related.
 

minnguy

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I should also say that my left tibial fwave latency increased from the first EMG to the second EMG. Which I've read is potentially an early indicator. No other fwaves increased, only the one for the nerve where the twitching is now full strength. Any thoughts?
 

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back pain and pin prick sensations around rib cage
EMG of left side were normal, spinal tap normal as well.
tightness and spasm type feelings in my throat
Pain while swallowing
EMG on left side limbs was normal
weakness in my toes is very subjective
pain while inhaling and exhaling
muscle aches throughout
the question of "too early" has been raised
doesn't muscle weakness become painful if the weak muscle is strained

Hi MinnGuy,

Let me get the count right first. Two neurologists have examined you, questioned you, performed tests including two EMGs, and they have told you that you don't have ALS. Then on this site, 4 people with experience in ALS have told you that you don't have to be worrying about ALS.

Let me answer your question: "doesn't muscle weakness become painful if the weak muscle is strained?"

No, a muscle doesn't become painful in ALS. ALS doesn't hurt the muscle, and the weakened muscle cannot be overstrained. How much "pressure" is put on to a muscle is controlled by the motor nerves. In ALS, the nerve is the thing that is destroyed, so it CAN'T tell the muscle to strain itself until pain.

There is no question of "too early." The sequence of events in ALS is like this:
First, ALS attacks the motor nerves in your brain.
Once ALS damages the nerve, this event is forever detectable on EMG.
Second, because the nerve is destroyed, it doesn't transmit control signals that would normally make the muscle contract.
Third, you might notice that the muscle no longer works, forever and forever. It doesn't feel weak, doesn't feel fatigued or tired or strange. It just doesn't go.

You're dealing with something else, not ALS, just like 4 experienced people and two neurologists have been telling you. Good luck.
 

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My thought is that you are not presenting with ALS symptoms, just like the others have said. I don't think we can really go any further, but you can keep working with your doctors til you get to bottom of what is going on.

You really can't do the EMG too early. All the best, I think that persisting here is not good for you now.
 
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