Question about diagnosis wording

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orphansparrow
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Question about diagnosis wording

Post by orphansparrow »

Hello,

My name is Cara. My husband was recently diagnosed (last week) with what his neurologist believes is PPMS. However, I was reading his diagnosis from the lab and the wording is confusing to me. Can someone help?

The findings say this:

"There is a severe leukoencephalopathy involving essentially every white matter region." (It then goes on to describe exactly *where* all of this leukoencephalopathy is.)

Then at the bottom of the paragraph, the last two sentences say this:

"Given the patient's age, a demyelinating process such as multiple sclerosis favored. At this time, there are no areas of restricted diffusion or enhancement which definitely indicate active/acute demyelination."

So what confuses me is the last sentence. It says there are no areas of restricted diffusion....which definitely indicate active/acute demyelination.

Doesn't that go against what the first sentence is saying? If not, what are they saying here? Can someone explain what this means?

Thank you so much for your help!

Cara
ElliotB
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Re: Question about diagnosis wording

Post by ElliotB »

Your best bet is to ask his doctor directly.
orphansparrow
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Re: Question about diagnosis wording

Post by orphansparrow »

I will. Ill try to be patient. I just thought someone here might be familiar with this kind of thing and have some insight. Thank you Elliot.
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NHE
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Re: Question about diagnosis wording

Post by NHE »

Hi Cara,
Was his MRI performed with and without gadolinium contrast? Did they image both the brain and the cervical spine?
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1eye
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Re: Question about diagnosis wording

Post by 1eye »

My limited experience says that if the radiologist mentions a diagnosis in his report, the neurologist will accept this. You have been diagnosed. If the patient is older, it might mean the lesion is older too, which would be why there is no active demyelination. With gadolinium contrast (which causes its own problems), the gadolinium will cause some brighter areas, because the lesions are usually centred around a medium sized blood vessel. The gadolinium is dissolved in the bloodstream, which will then leak out around the central blood vessel where the lesion is. Gadolinium is very bright on the MRI, so you can see the lesion really well.

What may be being referred to with the diffusion is that you might see an active lesion that way, even if no contrast is used. The leakage of blood into the brain (which, as we have seen, is very bad, even one drop of blood) is what is referred to when it is said the Blood-Brain-Barrier is breached, because in the brain, specially-protected blood vessel walls are supposed to prevent raw blood from touching brain tissue. If the gadolinium gets through, it means that blood got through too.

I am not a doctor.
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orphansparrow
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Re: Question about diagnosis wording

Post by orphansparrow »

NHE wrote:Hi Cara,
Was his MRI performed with and without gadolinium contrast? Did they image both the brain and the cervical spine?
I know they used the contrast, I don't believe they performed one without. They did an MRI of the spine on a different day, and we are still waiting for the results for that.
orphansparrow
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Re: Question about diagnosis wording

Post by orphansparrow »

1eye wrote:My limited experience says that if the radiologist mentions a diagnosis in his report, the neurologist will accept this. You have been diagnosed. If the patient is older, it might mean the lesion is older too, which would be why there is no active demyelination. With gadolinium contrast (which causes its own problems), the gadolinium will cause some brighter areas, because the lesions are usually centred around a medium sized blood vessel. The gadolinium is dissolved in the bloodstream, which will then leak out around the central blood vessel where the lesion is. Gadolinium is very bright on the MRI, so you can see the lesion really well.

What may be being referred to with the diffusion is that you might see an active lesion that way, even if no contrast is used. The leakage of blood into the brain (which, as we have seen, is very bad, even one drop of blood) is what is referred to when it is said the Blood-Brain-Barrier is breached, because in the brain, specially-protected blood vessel walls are supposed to prevent raw blood from touching brain tissue. If the gadolinium gets through, it means that blood got through too.

I am not a doctor.
He is 41 years old. As far as I know, they only did the MRI with the contrast. I don't think they did it without. I'm going to mention what you have brought up here to the doctor in a couple days.

Thank you for your insight.
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1eye
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Re: Question about diagnosis wording

Post by 1eye »

orphansparrow wrote:
1eye wrote: I am not a doctor.
He is 41 years old. As far as I know, they only did the MRI with the contrast. I don't think they did it without. I'm going to mention what you have brought up here to the doctor in a couple days.

Thank you for your insight.
If there is no "active demyelination", i.e. no blood/gadolinium seen on the lesions, there could still be inactive ones, like there were for my diagnosis, seen without contrast. It sounds like there are lesions all over the place. See radiologist: ask for a consult. Look at the MRIs and ask for an explanation.

I am not a doctor.
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Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
ElliotB
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Re: Question about diagnosis wording

Post by ElliotB »

MRIs are of limited usefulness as you can have lesions without symptoms and symptoms without lesions, and they (lesion) can come and go quickly as illustrated here (although they are often relied on for diagnosing MS):

http://www.msdiscovery.org/news/news_sy ... -meets-eye

As 1eye mentions, the material used for 'contrast' is not the best to have in your body. Please refer to this article:

https://gadoliniumtoxicity.com/help/symptoms/
orphansparrow
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Re: Question about diagnosis wording

Post by orphansparrow »

ElliotB wrote:MRIs are of limited usefulness as you can have lesions without symptoms and symptoms without lesions, and they (lesion) can come and go quickly as illustrated here (although they are often relied on for diagnosing MS):

http://www.msdiscovery.org/news/news_sy ... -meets-eye

As 1eye mentions, the material used for 'contrast' is not the best to have in your body. Please refer to this article:

https://gadoliniumtoxicity.com/help/symptoms/
Thank you Elliot. I wish I would've thought to research the contrast before he had it done. I have a lot to discuss with the doctors.
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