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linz6418

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Hello,
Posting here will likely be regrettable (for my own mental/emotional state, not bc of you fine people), but I was wondering if an individual has all of the symptoms related to ALS, was originally diagnosed with it after an EMG, but then another doctor determined it to be spinal myolopathy from a fall, if he actually has ALS. He had no symptoms, fell last December, and then developed drop foot and weakness. Had the EMG in the spring at local hospital that produced diagnosis of ALS/spinal myolopathy- another doc ruled out ALS and pushed SM. He was relatively healthy and strong in time leading up to spinal surgery in June (went perfectly-follow-up MRI has also demonstrated that), and has negatively/quickly progressed since with all cardinal ALS signs (weight loss, skin crawling, loss of fine motor skills, general weakness that began on one side). Went to ER right before Thanksgiving because he woke up one morning with a slight slur, had brain mri, cat-scan, blood work- nothing came up. The neurosurgeon in ER told him it was physical therapy related- he's been going to PT since surgery but doc believed he needed more strength training. Not all symptoms are consistent, except muscle weakness and atrophy in all limbs. He's a 66 year old man. Went to family doctor yesterday and he's concerned enough to send him back to Cleveland Clinic. However, my dad can stand on the drop foot and balance himself, while lifting up his leg and I believe that his reflexes are within the normal range (all good, non-ALS right?). Can the disease progress so quickly? Have you ever heard of someone being diagnosed with ALS and then having it changed? My father and I are extremely optimistic people by nature (he does not believe he is dying), however, the entire family is really struggling right now. I know none of you are doctors, and that the internet is the devil, but I am looking for some hope or information to quell my fears until he has another EMG. I turned to this site and others in the hopes that I would find something telling me it's not ALS, but instead it's made me feel a terrible, deep fear inside. I do not know specific language of EMG (and don't want to upset my mom by asking), however, that diagnosis was never forwarded to Cleveland Clinic- just spinal myolopathy. Anyone have some positive insight? Will praying to every known god and making a million wishes change anything? I really love my dad and just want him to get better. Thanks in advance for your advice and if everyone wants to just tell me instead that I have a reason to be hopeful, please share :D
 

Tokahfang

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Honestly, myelopathy is a very generic term. There are specific myelopathies that describe particular things (i.e. cervical spondolytic myelophathy), but as a general term it is almost the spinal equivalent of saying "bum leg". In it's most vague sense, it can equally refer to the kind of injury you get from an accident, problems from a herniated disc, lesions from a disease, etc. (Can you imagine having a term that didn't differentiate whether your leg was burned, broken, or stabbed?)

If your dad is responding to physical therapy, has atrophy but can still stand on his drop foot, those are hopeful signs. Keep your chin up!
 

linz6418

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Thanks very much for your kind response. The spinal surgery repaired an extremely damaged area of his spine near his neck region and we have been confidently told by the surgeon that this was needed no matter what. I'm hopeful that some of the conditions noted in the EMG could be explained by this trauma, hence, the reversed diagnosis. While I let myself have a very bad yesterday, I am back on the optimistic train and am hoping for the best. If reading this forum has taught me anything, it's to take things one day at a time and it's only ALS when it's nothing else! :razz:
 

linz6418

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One other point to add, that perhaps will lead to more insight... (as I'm currently believing it to be something else :grin:)

The fasciculations began in his arms long before any other symptoms presented themselves (by almost a year or so I believe) and the first thing we noticed to be wrong was the development of drop foot a little while after the fall. Also, there are days when the strength in his hands is not great, but he can accomplish daily tasks such as buttoning his shirts, pants, opening the cash drawer at work, etc (he is a small business owner and is still working 6 days a week full time). He's doing great balance work in the pool and they have him holding himself up with his arms and peddling like he's on a bike for 20 min with no problem. He can walk up and down a flight of stairs alright, but is unsteady on his feet and uses a walking stick. Also, the slight slur is not always present, but appears more so when he is under stress or tired.

What I'm getting at is this- do the symptoms of this disease come and go? I'm not saying that he is suddenly healthy and fit, but he does appear to be much better for many days in a row before he has a bad day in which he struggles.

Again, your advice is appreciated, however, hopeful information much more so ;)
 

HelenL

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While you can have better days, once you lose function it won't come back.Did the neuro say if it was clinical weakness or perceived weakness? Much of what he's going through is probably explained by his spinal issues. Honestly, if he has issues in all 4 limbs so soon, that would also tend to point away from ALS, as it is not symmetrical.

Good luck and hope he'll continue to have clean EMGs...
 

linz6418

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Thanks for your response. My main concern is the original diagnosis. :( From my reading it is obvious that the two (spinal myelopathy and ALS) are extremely similar except for EMG reading and the twitching. My new conclusion is that both were present. What are the chances?!? 95% of all EMG readings are accurate (upon learning this, my hope has begun to fade a little), however, it's baffling why a neurologist would diagnose him with ALS and the neurosurgeon would diagnose him with SM based on same result, without even passing along the diagnosis of ALS as well. I would appreciate any other insight or individuals who have experienced a similar situation and would like to share. Thanks!
 

Alyoop

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I would have thought the EMG " picture" would be very different. I would tend to believe the neurologist over a neurosurgeon. I know that's not what you want to hear.
On a positive note, there are people on this site who have indeed had there diagnosis changed from ALS or PLS to other things. ALS can be hard to diagnose sometimes.
 

bob_s

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Nov 13, 2012
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PALS
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11/2012
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What did the EMG show?

My diagnosis changed from cervical spondylotic myelopathy from herniated cervical discs to ALS. So not the direction you're looking for.

Bob
 
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