Terrified and Devastated -bad EMG looking for hope

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Livinghope

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I had a bad EMG that was abnormal and neurologist said “suggestive of MND ALS.” I find it impossible to believe because I’ve been in severe excruciating pain for over two years. It all started with insane neck pain headache pain into the ER with triggerpoint injections.to alleviate. Ian level like 10+. Pain. Then I had weak arms ans eventually my shoulders and biceps got weak and semi paralyzed. This was over a year ago about 18 months, my EMG Then said all coming from neck and “Central Cord Syndrome” and incomplete spinal cord injury. Neurosurgeon found severe herniated disc and I had fusion surgery. Weakness continued and legs got weaker. Arms stayed same, maybe improved a little. Meanwhile having severe muscle pain and neck aches. This is what I’ve be diagnosed with neurologist says I have 2% chance ALS. I go to new neurologist and orders new EMG and very cold as a fish phone call tells me, “as I suspected suggestive of MND and ALS.” NO talk of treatment or testing or anything. I’m like what the hell.? Both new EMG abnormal But first one he told me it looked like coming from the spine. They’ve ordered new MRIs. I did upright MRI which only my neurosurgeon seems to be able to read so I need new one.
I’ve had small improvements,like my pinky wemt out and via exercise, I brought it back to be able,to type again. I canot walk well however or navigate stairs without help,atm. I’ve been diagnosed walking quadriplegic my neurosurgeon warned it could be permqmemt.
im terrified and devastated but I just don’t feel like I meet the ALS profile.please help me and give me some hope.
 

lgelb

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Sorry for your troubles. If you can post your latest EMG report and tables, we can be more helpful. Do you use a mobility device when walking? Whatever the issue, falls are to be avoided.

Best,
Laurie
 

Livinghope

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Thank you here at the two most recent EMG does not include one from a year ago that showed Central Cord Syndrome, please give me some hope
 

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Livinghope

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Thank you I posted I’m really hoping for some thing A shred of hope, even a small percentage
I hobble around and sometimes iuse a walker
 

Nikki J

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I am sorry. The results look very worrying. The emg is of course just a test but an important one. Still part of the diagnosis is excluding everything else which is why they want more mris. There is a saying it isn’t als until it isn’t anything else and spinal cord is something they look at.

you want two neuromuscular opinions that concur before accepting the diagnosis. I would be planning for another now especially as you did not like the current doctor ( but would continue the current workup unless you believe them incompetent particularly the mris which can usually be read by anyone trained).are they an als specialist? Look for an ALS specialists at a major hospital -are you near Mayo? They could be one opinion

please use your walker consistently. As Laurie says falls are bad whatever the underlying disease. They can be catastrophic for people with ALS
 

Livinghope

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Yeah but I do have spinal cord issues and diagnosis, my MRI showed spinal compression and herniated disc and my previous EMG showed CCS so it’s possible that is going on still I think
On the one I have zero fasciculations and the pain, I am in Ltd of pain
Do I really need to race to a diagnosis?
Thanks for note about falls
 
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Nikki J

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I understand that and I hope the answer is that your spinal issues do indeed account for the emg. We can’t tell that here. It is of course a call for the doctors but I do think you are going to need more opinions and they should be experts at university level because you are clearly complicated. Somewhere like Mayo you could have neuro and neurosurgery consult if necessary
I think if this is spinal there may not things they can do that if it is ALS would be detrimental ( like some pt) so it matters that way. Planning would be different and there are ALS meds to take. I am not sure you would qualify for a trial which is usually a reason to hurry to diagnosis but I would want to know aside from the practical reasons. You may feel differently

do you have ssdi and medicare yet? It sounds likely you can’t work but if you don’t have both and stopped working an ALS diagnosis is an automatic approval if you have enough work credits
 

Livinghope

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Ok thanks I don’t have ssd what do you mean about pt? That is bad for als? Or spine? Wasn’t sure what you meant
 

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Here’s my other EMG
 

Nikki J

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Someone with a spinal issue might have a goal of strengthening muscle. PALS can not build muscle and overexertion can speed progression. Both might have pt but the goals would be different. I think you need clarity whatever the answer is. It is also true that a person can have 2 diagnoses ( or more) that are correct
 

Livinghope

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Thanks for your answer, what is PALS?
 
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