Just been diagnosed by two ALS specialists

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PaulBerger

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I have just been diagnosed by two ALS specialists at OHSU and Providence. Am academic shrink not sure if that is helpful. Don't have any upper motor neuron signs (bilateral babinski, bilateral hoffman and jaw jerk WNL) and have normal reflexes except for brisk knee reflex which I have always had. Notably my fasciculations disappear with sleep. Have no fasciculations either falling asleep or upon awakening. Was taught during Yale psychiatry residency that tardive fasciculations disappear with sleep (and took quetiapine to cope with divorce) whereas neuromuscular fasciculations don't. A google book search plugging in sleep als and fasciculations confirms this with Dejong saying page 507 that fasciculations continue during sleep and spouses observing fasciculations in sleeping ALS husband or wife.

Is there any hope of my not having ALS. Oddly I have a third neurologist who is not an ALS specialist who has been more conservative on making the diagnosis. It is from her that I got the information on not having upper motor neuron findings. I would appreciate any comment from the Neurologists or expert lay people that frequent this forum.
 

Nikki J

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To the best of my knowledge we have no neurologists or neurophysiologists who are active participants on the forum at this time.

If you have no upper motor neuron signs but an EMG and clinical exam consistent with what is seen in ALS technically the diagnosis would be PMA but often it is called LMN dominant ALS because the issues as much the same and because benefits like SSDI come with an ALS tag more easily.

You have not shared your symptoms, clinical exam beyond the negative UMN findings, or EMG so don't know how realistic hope for another diagnosis is. Generally true ALS specialists do not give such diagnoses lightly. Sorry
 

KarenNWendyn

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How long have you had your symptoms? What about atrophy or weakness? What did the EMG show and how long have they been monitoring you? Did your other neurologist have access to all the same test results?
I also went up to OHSU for their opinion, and they wanted to monitor more over time and repeat EMG before confirming diagnosis. An acquaintance of mine went up to OHSU for a year before they finally diagnosed him with ALS.
If anything, it seems to me that ALS specialists err on the side of holding out on the diagnosis until they're 110% sure. I can understand they wouldn't want to mislabel people.
It sounds like there's still some uncertainty in your situation. I guess to answer your questions, I (and others) would need further info.
 

lgelb

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Hi Paul,
I'm sorry to hear your dx. As Karen notes, clin weakness +/- atrophy is missing from your summary -- do you have it?

The lack of UMN findings is not unusual at dx so wouldn't hang any hats on it. I venture to say at least 50% here didn't meet classic criteria [that are still evolving] at clinical dx, either in terms of numbers of affected regions or LMN + UMN. Most neuros no longer consider PMA a distinct entity in that most "PMA" ultimately manifests as ALS. Also, we are gaining ability to detect UMN lesions in new EMG modalities gradually.

True that neuromuscular fascics can manifest in sleep, but since sleep itself is disordered in MND and I'm not sure who's observing your sleep throughout the cycle, can we be sure that yours don't? And even if they didn't, does not mean tardive explanation. Again, I am presuming that your clinical signs are considerably more than fascics.

I hope better news presents itself and we could be more helpful if you want to post the EMG, but from what you have said, I don't detect any particular reason to doubt. You can hope for the best and plan for the worst, as everyone should at dx.

Best,
Laurie
 

KW1234

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Welcome fellow Portlander, I was diagnosed last October after seeing neuros at Providence and OHSU. In my case I had clear weakening of muscles and bulbar manifestations. My emg was pretty definitive.
 

PaulBerger

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Thanks everyone for the input. Have background in psychopharmacology and medication development. Ask your Neurologist about acetyl-carnitine for ALS, a harmless natural product.

In terms of my symptoms banged right elbow and have ulnar nerve related atrophy in hand. Have also denervation renervation upper arms and legs on EMG. Don't have atrophy in right upper arm. Prefer to keep hope alive until I get atrophy somewhere else. For the Oregonians here can still bike up to the Fairmont loop by OHSU from bottom. Am obviously very scarred even terrified.
 

lgelb

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Um, "harmless" is a stretch for most compounds, ACA included. We try to avoid hyperbole here, so let's say "safe for most people."
 

Lkaibel

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My husband 14 months out and with progression still does not fill the full diagnostic criteria. He also has at least one neuropathy in addition to ALS. I guess when his neuro system gave way it decided to go big or go home.

I agree with planning for the worst. If your ALS specialist are true specialists errors are rare. I'm sorry. However, you know your condition will continue to be monitored over time. Revised diagnosis happens, I would just not get too involved in the possibility.
 

KW1234

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A year ago, at this time I did the Banks to Vernonia trial round trip and later in August was in Southern Oregon for the Britfest and cycling when I lost my balance getting off my bike, crashing hard to the pavement breaking a rib. That started my diagnostic journey. I switched to swimming a mile three days a week while my rib healed. I was diagnosed in October. Now, less than a year later, I am wheelchair bound. We had to sell our three level townhouse, buy a single story house and make it Handicapped Accessible. My recommendation: plan for the worst, hope for the best, and live each day to the fullest. Take each day one day at a time, there is alot to think about. My progression has been pretty fast, your's may not be.
 

PaulBerger

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Thanks everyone for the support. Much appreciated
 

PaulBerger

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Sorry to hear about your rate of progression. Exercise protects in some of the animal models. Sad, that was not your experience. Have attached the one acetyl-carnitine study in the ALS literature in case it is of interest.

https://www.ncbi.nlm.nih.gov/pubmed/23421600



A year ago, at this time I did the Banks to Vernonia trial round trip and later in August was in Southern Oregon for the Britfest and cycling when I lost my balance getting off my bike, crashing hard to the pavement breaking a rib. That started my diagnostic journey. I switched to swimming a mile three days a week while my rib healed. I was diagnosed in October. Now, less than a year later, I am wheelchair bound. We had to sell our three level townhouse, buy a single story house and make it Handicapped Accessible. My recommendation: plan for the worst, hope for the best, and live each day to the fullest. Take each day one day at a time, there is alot to think about. My progression has been pretty fast, your's may not be.
 
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