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EMG Help
Hello! My 35 year old husband has been "clinically" diagnosed with ALS. I am very frustrated by the process and I want to know why it can't be a variety of other things, such as CIDP, MMN, IBM, etc. All of his symptoms happened after a horrific viral infection that he got in Cancun in Feb. 2014. Everyone seems to discount this trip, and we are very frustrated by it. This is the summary of his last EMG. He has had 3 in a calendar year and this is the only one with anything on it. I realize that you can't diagnose him, but any help is greatly appreciated. We are heading to Mayo Clinic in June, so the waiting is killing us. We have three children, 5 and under, so this is most definitely the most horrific thing we could possibly imagine. Thank you in advance.
Can someone interpret it for me? This is what it says:
"This is an abnormal study. There is electrophysiologic evidence of chronic neurogenic changes associated with fibrillation and fasciculation potentials in left cervical myotomes and subtle neurogenic changes without abnormal spontaneous activity in left genioglossus muscle.
There is no conduction block, temporal dispersion or prolonged F-wave latencies to suggest demyelinating neuropathy.
These changes do no fulfill the revised El Escorial criteria of definite ALS. A repeat EMG is four to sixth months could be considered to access the progression of neurogenic changes, if clinically indicated."
Can someone interpret it for me? This is what it says:
"This is an abnormal study. There is electrophysiologic evidence of chronic neurogenic changes associated with fibrillation and fasciculation potentials in left cervical myotomes and subtle neurogenic changes without abnormal spontaneous activity in left genioglossus muscle.
There is no conduction block, temporal dispersion or prolonged F-wave latencies to suggest demyelinating neuropathy.
These changes do no fulfill the revised El Escorial criteria of definite ALS. A repeat EMG is four to sixth months could be considered to access the progression of neurogenic changes, if clinically indicated."
Hey there-
How are things going? Have you have your appointment at Mayo? Praying for a good outcome
How are things going? Have you have your appointment at Mayo? Praying for a good outcome
The hard time moving in morning and better at night, isn't what a lot of ALS patients complain about. Does sound complete opposite.
All this waxing and waning does give hope. At least a chance it could be something else. I am so surprised that they have not done a Spinal Tap. Have they ruled out MS? Sometimes MS lesions can be in the spine if not in the brain. Then usually they do a spinal tap and evoked potential test. Worth a shot.
In regards to hands you say achy. Do they just hurt or do they cramp up? 18 months is a long time. You would have figured it if was ALS significant lose of function should have showed up by now.
Anxiety can do a lot to the body. But it wouldn't change anything in an EMG. He has two clean ones and one EMG with some indicators. Mayo will do there own EMG. I have a feeling you will have a solid understanding on what is going on at your appointment.
In my opinion, you definitely have hope, unfortunately, ALS is so freaking nasty that it tends to do what it wants.
How are his spirits? Anxiety will make symptoms worse.
All this waxing and waning does give hope. At least a chance it could be something else. I am so surprised that they have not done a Spinal Tap. Have they ruled out MS? Sometimes MS lesions can be in the spine if not in the brain. Then usually they do a spinal tap and evoked potential test. Worth a shot.
In regards to hands you say achy. Do they just hurt or do they cramp up? 18 months is a long time. You would have figured it if was ALS significant lose of function should have showed up by now.
Anxiety can do a lot to the body. But it wouldn't change anything in an EMG. He has two clean ones and one EMG with some indicators. Mayo will do there own EMG. I have a feeling you will have a solid understanding on what is going on at your appointment.
In my opinion, you definitely have hope, unfortunately, ALS is so freaking nasty that it tends to do what it wants.
How are his spirits? Anxiety will make symptoms worse.
Lyme Disease is the biggest. Also, late stage Syphilis, Syringomyelia, MS, IBM. those are the ones I hear about the most.
Have he had Brain MRI, Spinal MRI, Spinal Tap?
I had Spinal Tap on March 1st. They checked for MS and 30 other diseases including several lyme disease and Auto-Immune Stuff. All Negative.
You mentioned things turned after Mexico trip. Could have picked up a Virus there.
I know 17 years ago. I had Left side weakness and lived in dizziness for 2 years straight. The left side weakness comes and goes to this day, but only a few times per year. Doctors never figured it out. One day I came out of it and normal again. Doctors later told me sometimes there are things they don't know and body heals itself. I really hope this is your guys case.
Is your husbands upper arm twitching constant. Is the area big or small? Alot of the mimics cause twitching. What is date of Mayo?
Just in case. Make videos of your husband. Record his speech on good days. Make memories. If all comes out well, then you have great practice on how to live in the moment.
Have he had Brain MRI, Spinal MRI, Spinal Tap?
I had Spinal Tap on March 1st. They checked for MS and 30 other diseases including several lyme disease and Auto-Immune Stuff. All Negative.
You mentioned things turned after Mexico trip. Could have picked up a Virus there.
I know 17 years ago. I had Left side weakness and lived in dizziness for 2 years straight. The left side weakness comes and goes to this day, but only a few times per year. Doctors never figured it out. One day I came out of it and normal again. Doctors later told me sometimes there are things they don't know and body heals itself. I really hope this is your guys case.
Is your husbands upper arm twitching constant. Is the area big or small? Alot of the mimics cause twitching. What is date of Mayo?
Just in case. Make videos of your husband. Record his speech on good days. Make memories. If all comes out well, then you have great practice on how to live in the moment.
Thank you! I just feel like a "clinical" diagnosis, no matter how long you have been doing this, warrants continued testing to rule things out. His hands have been bugging him for about 18 months. They are just constantly achy and he's always asking me to rub them. He wakes up with them, and his elbows, burning at night. He has strength in them, but sometimes does struggle to do some things. He will walk away and come back and try again and then can do it. I think that some of it is in his mind, especially now that he is "diagnosed." They haven't done a spinal tap or MRI of his back and he has degenerative issues in the Lumbar spine. We've known this since 2012. I'm so terrified and feel like it is about 50/50 right now. I'm so anxious for Mayo, but scared at the same time. If they confirm it, it's pretty much a done deal. His fasciculations come and go and today his speech sounds totally normal. His grip strength and finger resistance come and go, too. The oddest things that happens is he will "lock up" whenever he has any type of adrenaline rush. They told us this is Psuedobular, but I can't find any text that supports that. He doesn't have uncontrollable laughing or crying, he just gets stiff and walks like a robot. Also, he has a really hard time moving in the morning and is fine at night, which based on what I've read, is opposite of ALS. I know I'm grasping at straws, but I will until there is no question this is what it is. Thanks for the reply.
He is getting blood drawn and sent to IGENX tomorrow to test extensively for Lyme. His Western Blot came back negative, but we live in CO and are outside all summer long. What other mimics are there? I'm trying to go to Mayo armed with as much research as possible. I'm terrified, but trying to remain hopeful. Thanks for the answers.
There definitely is some hope in your story, but I'm sure you are also preparing for the worst.
Mayo Clinic should do extensive tests to try to get to the bottom of this. I'm sure good or bad you will leave with some answers.
If it is bad, Your husband is young, so hopefully it is slow progression. There have people who live quite a good amount of time who have slow progression.
I have twitching in my arms also, but if I shake it, it stops. It's all over my body. But very random.
Your husband symptoms seem to come and go. Just seems like that is not consistent with ALS.
Normally, in clinical exam. Neuro, if suspects ALS will see significant hand strength and leg strength decreases. Like not being able to walk on tip-toes or heels at all. Or grip strength very noticeable weak. Reflexes are important but if they are symmetrical then could be normal.
That is insane how they are not being 100% upfront with you guys, it's your family they talking about. You should demand reasons why they think this, this is not a disease with a cure, they are being really unprofessional. They should have explained it in terms you guys can understand.
I pray that there is a different outcome. I have 4 children and that is the part that scares me the most about my health. Get the most out of everyday no matter what the outcome is.
Mayo Clinic should do extensive tests to try to get to the bottom of this. I'm sure good or bad you will leave with some answers.
If it is bad, Your husband is young, so hopefully it is slow progression. There have people who live quite a good amount of time who have slow progression.
I have twitching in my arms also, but if I shake it, it stops. It's all over my body. But very random.
Your husband symptoms seem to come and go. Just seems like that is not consistent with ALS.
Normally, in clinical exam. Neuro, if suspects ALS will see significant hand strength and leg strength decreases. Like not being able to walk on tip-toes or heels at all. Or grip strength very noticeable weak. Reflexes are important but if they are symmetrical then could be normal.
That is insane how they are not being 100% upfront with you guys, it's your family they talking about. You should demand reasons why they think this, this is not a disease with a cure, they are being really unprofessional. They should have explained it in terms you guys can understand.
I pray that there is a different outcome. I have 4 children and that is the part that scares me the most about my health. Get the most out of everyday no matter what the outcome is.
They didn't explain anything to us. He had two clean EMG's before this one (one was about a month prior, which said it couldn't distinguish between early MND and Benign Fasciculations. The Neuro that did it said there was nothing to worry about.) As far as the clinical diagnosis, the report is hard to read, but his Babinski was fl/fl, which I've determined through research is normal (?). I think it means flexion/flexion. He had brisk reflexes of 3/3 in everything except his quads and they were 4/4. He has fasciculations. mainly in his upper arms and they come and go in his legs and lower arms. His speech is "slurred" on occasion and sometimes it is fine. It sounds like he has been sucking an on ice cube and then he tries to talk. I'm so terrified right now. We go to May Clinic in two weeks and it can't here soon enough.
My brother had ALS at 39 yrs old.--- 10 yrs ago.-- The doctors said there was no for sure test for ALS-- They said --Do all other tests if not those- then ALS is their guess.-- I don't know if it same today. I always thought that shows they know nothing for sure about ALS. The mind is a powerful medicine. think positive!
"There is no conduction block, temporal dispersion or prolonged F-wave latencies to suggest demyelinating neuropathy".
The above statement would definitely eliminate CIPD. MMN is also probably eliminated too.
IBM is only 20% cases before 50. ALS is 10% under 40. I'm hoping IBM is the case, it's not great to half either.
There are other mimics, hopefully Mayo can get to bottom of it. With the EMG's, I wonder what they saw in clinically.
Does he have fasiculations? Are they constant?
The above statement would definitely eliminate CIPD. MMN is also probably eliminated too.
IBM is only 20% cases before 50. ALS is 10% under 40. I'm hoping IBM is the case, it's not great to half either.
There are other mimics, hopefully Mayo can get to bottom of it. With the EMG's, I wonder what they saw in clinically.
Does he have fasiculations? Are they constant?
It sounds like there is issues in his throat region. Does he slur his speech? Is it constant if he does?
The left cervical myotomes is spinal. Did they explain this too you? Depending on where it maybe affecting his arms or hands or a particular hand.
It sounds like EMG is not 100% conclusive.
You mentioned "Clinical Diagnosis" What parts of clinical exam did your husband fail? With this EMG, there had to be something in exam that lead the Neurologist to concluding it is ALS.
He is fairly young for this disease. I can't imagine what your family is going through. I hope you get answers at Mayo Clinic. Did they explain to you why from the clinically exam they came up with ALS
The left cervical myotomes is spinal. Did they explain this too you? Depending on where it maybe affecting his arms or hands or a particular hand.
It sounds like EMG is not 100% conclusive.
You mentioned "Clinical Diagnosis" What parts of clinical exam did your husband fail? With this EMG, there had to be something in exam that lead the Neurologist to concluding it is ALS.
He is fairly young for this disease. I can't imagine what your family is going through. I hope you get answers at Mayo Clinic. Did they explain to you why from the clinically exam they came up with ALS
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