Different diagnosis with every Dr. I see.

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Re: Different diagnosis with every Dr. I see.

Postby BFSBurger on February 4th, 2014, 8:17 pm

I would also encourage you to differentiate between an off the cuff comment with significant context where the doctor may have inadvertently said "its possible" to ALS ... versus an actual diagnosis.

There's a huge difference between what doctors rattle off in conversation, and what they write down at the end of the exam.

So is it possible this was a conversation versus a diagnosis, written in exam notes?

As a side note, I had one of the top cancer specialists in south florida tell me it *is* ALS ... right to my face.

Fortunately, this was after a full year of pep talks (from people here) to the contrary, so his comments did not amount to a hill of beans in my mind.

Doctors are just people and they often talk a lot of nonsense. Although I'd expect more from Mayo, it may have just been a "remote possibility" they were mentioning.
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Re: Different diagnosis with every Dr. I see.

Postby ShawnW on February 13th, 2014, 4:33 am

Yulia once mentioned to me the term "information hygiene". When you have anxiety I would have to caution where you get information. My heart goes out to Derek, as I'm sure this is a very trying time in his life. With that said, there are many missing pieces to this story, I'm surprised this hasn't been discussed in this thread. ALS is a diagnosis of exclusion. You can have migrating hypereflexia, with clonus, Babinski, Hoffman, weakness and atrophy and most of the time it's still not ALS. There are many common causes of these even in the cases where there are no sensory deficits.

Let me give two examples...I have a co-worker who went into his FP who noticed thenar atrophy, no other symptoms. How many people here would assume they had the big dog? Well he had a nerve lesion in that arm...yes without pain. The most common reason is for someone to have a cervical myelopathy, or some lesion of the spinal cord. While most of the time there is pain, that isn't always the case. Sometimes it's just weakness and pathological reflexes. I have seen this same set up in the case of alcoholics going through DTs. The Babinski is so strong you can stroke the stop of the foot and elicit it. Clonus 4+ reflexes, gait abnormalities...the works.

Most of the time when someone presents with concerns to the neurologist about ALS, they get sent home with get out of here...you are just anxious. But, with Derek he had weakness and issues with hyperreflexia. In that case, you can't rule it out on the front end until you do more testing. But, you don't just sit back and wait. And what I'm not reading about is blood work looking for systemic causes, MRI of the head and neck looking for other CNS causes etc. Hyperreflexia without clonus or a pathological reflexes is considered 3+ and that is still a normal reflex if symmetrical. Even in a case where you can elicit a 1+ patellar, and a 3+ patellar bilaterally without clonus or Babinski...most of the time its not ALS. Usually there was an old injury causing this...just raises your eyebrow a bit. You ask questions.

And again, fasiculations all over the body are not ALS. The disease process doesn't work that way. You will have hypperreflexia, then weakness, then atrophy, then fasiculations. Many times its in that order. I will not say always...but usually. It's also usually going to start in an isolated limb...AFTER you already know something is clearly wrong. Rare presentations of a rare disease is not something people with health anxiety should focus on. So, if you are reading this thread losing your peace of mind...STOP it.

And this is the problem with hinging your peace on the stories here or anywhere. Most of the people who come here have health anxiety. We look for solace with stories, but with that comes stories like these come the occasional story that shakes you up. Our peace HAS to founded somewhere else or it will always be fragile. Today choose faith and acceptance. Stop trying to control the uncontrollable. BTW this lil pep talk is for me as well :wink:
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