Email to neurologist about MRI

H

Husband of

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Hi all,
We went to see a neurologist a while back who agreed to do an MRI to give me peace of mind that there wasn't something mechanical going on.

however, she was originally quite dismissive of the idea and I have several reasons to believe she thinks MECFS is psychological.

with that in mind, I want to email with the following aims
1. To get her to believe there might be a possibility of a mechanical reason, to ensure she takes a proper look at the scans rather than just glancing over them and dismissing them
2. To make sure all the right scanning is done for all the things that could be implicated
3. To help her analyse the scans

And I want to supplement with as many references to journal articles as possible to make it seem as credible as possible.

i will update this opening post with the final email once constructed.

Any help will be appreciated. Particularly

what is the full list of conditions to look for from an mri?

How can we back this up In Terms of journal articles or other articles from qualified professionals (not Jeff wood or kjetil Larsen who the neurologist won't consider credible, although their writings could help frame the email)?
 
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A

Alvin2

The good news is patients don't die the bad news..
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You can't convince a doctor to see reason.
They seem to be taught that wisdom flows in one direction, from doctor to patient.
I have learned the hard way that once they think a certain way your wasting you energy trying to change their mind. Better to find a better doctor and get a second/third/tenth opinion.

That said an MRI will be read by a staff technician and the report sent to the referring physician. At times a neurologist will review it but thats uncommon.
Get a copy of the report because doctors often only glance at it and skip the fine details.

I also always get a copy of the images on CD for future reference.
 
A

Alvin2

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BTW you might get lucky and a trained Pigeon will read your MRI.
They have no anti ME/CFS bias :penguin:

Though i don't think they have graduated to brain MRIs (yet) :woot:
 
H

Husband of

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Thanks @Alvin2 . One thing I want to make sure is they actually do the right scans. I remember doing an mri for a very different reason and at different times they told me to hold my body in certain ways, and before I went in they put cushioning under certain parts of my body.

So, because I don't really know the full list of things they could look for, I want to at least highlight that in case they don't do the right scans.
 
A

Alvin2

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Husband of said:
Thanks @Alvin2 . One thing I want to make sure is they actually do the right scans. I remember doing an mri for a very different reason and at different times they told me to hold my body in certain ways, and before I went in they put cushioning under certain parts of my body.

So, because I don't really know the full list of things they could look for, I want to at least highlight that in case they don't do the right scans.
Click to expand...
They look for everything that MRI can detect.
If contrast is used extra things can be detected. Though some other things may be obscured.
That said an MRI of the head does not include the spine, its only the brain.
 
wabi-sabi

wabi-sabi

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Husband of said:
I can't find anything on here that would relate to reasons for MECFS like symptoms for which clues may be found from an mri??
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This is one of the more comprehensive ME/CFS info sites. I haven't looked through everything so I can't tell you which one to look at. But if you read all the articles you should find something to bring to your physician.

Doctors with ME is another pretty comprehensive site. https://doctorswith.me/
 
wabi-sabi

wabi-sabi

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H

Husband of

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wabi-sabi said:
I'm not sure MRI is used that much in the diagnosis of ME/CFS, other than looking at craniocervical instability. You are ruling out things like MS that can show on MRI.

As far as I can tell, MRI isn't that useful for ME/CFS. But I'm not really up on the research in this area.

Here's a recent review article: https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02506-6
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Thanks that's a very useful article, and interesting too (to the extent I can understand it)
 
Hip

Hip

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Husband of said:
To get her to believe there might be a possibility of a mechanical reason, to ensure she takes a proper look at the scans rather than just glancing over them and dismissing them
Click to expand...

Some mechanical causes of ME/CFS-like symptoms like craniocervical instability, atlantoaxial instability, Chiari malformation, cervical spinal stenosis and syringomyelia may require special types of MRI scan and require experts to interpret those scans. For example, some CCI surgeons ask for an upright MRI. So unless you neurologist has knowledge in this area, they may not be able to help.

Getting the right scans and the right medical experts to diagnose these mechanical issues is a major learning curve that ME/CFS patients interested in this approach go through. Most of the patient expertise is found on Jen's Facebook groups.
 
H

Husband of

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320
Hip said:
Some mechanical causes of ME/CFS-like symptoms like craniocervical instability, atlantoaxial instability, Chiari malformation, cervical spinal stenosis and syringomyelia may require special types of MRI scan and require experts to interpret those scans. For example, some CCI surgeons ask for an upright MRI. So unless you neurologist has knowledge in this area, they may not be able to help.

Getting the right scans and the right medical experts to diagnose these mechanical issues is a major learning curve that ME/CFS patients interested in this approach go through. Most of the patient expertise is found on Jen's Facebook groups.
Click to expand...
Ok, thanks, that's useful to know.

sounds like perhaps, despite having the privilege of getting an mri, maybe it's not worth the hassle

edit: I would note that the neurologist had heard of CCI and chiari
 
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Alvin2

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Husband of said:
Ok, thanks, that's useful to know.

sounds like perhaps, despite having the privilege of getting an mri, maybe it's not worth the hassle

edit: I would note that the neurologist had heard of CCI and chiari
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I would get it done.
That said if its going to cause financial hardship then perhaps not, but if you have something that is treatable then its worth it to find out.
 
L

lenora

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Alvin2 said:
They look for everything that MRI can detect.
If contrast is used extra things can be detected. Though some other things may be obscured.
That said an MRI of the head does not include the spine, its only the brain.
Click to expand...

There are many conditions that can cause the conditions we have....I have 3 of them and have had surgery. I believe the trend today is away from surgery, but can't confirm that's always the case. Scar tissue is easily formed on the spinal cord, so that's a consideration. Syringomyelia should also be mentioned with CCI and Arnold-Chair Malformation.

A good neurologist will suggest an MRI, don't mention your ME diagnosis but do mention the other symptoms.
Always make certain that an expert is your neurosurgeon. You want a proven record and The Bateman Home should be able to help you with material and recommendations.

Please remember that diagnosis is still relatively new. Until the advent of the MRI it wasn't possible to see inside many parts of the body. I was just extremely fortunate to have had one of the first MRI's in Dallas, Tx. at that time. 35 years may seem a long time, but it's a short time in medicine. Yours, Lenora
 
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Hip

Hip

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Husband of said:
sounds like perhaps, despite having the privilege of getting an mri, maybe it's not worth the hassle
Click to expand...

I don't know much about it, but it's possible a regular MRI and regular neurologist expertise will pick up conditions like Chiari malformation, cervical spinal stenosis and syringomyelia. You would have to ask the patients on the FB groups, as they know more.

But I know for CCI and AAI, you need expertise in interpretation, and specific types of MRI. Each CCI surgeon has their own preferences regarding the type of MRI used.


The results of this survey of ME/CFS patients show how common the various mechanical conditions are in patients.
 
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H

Husband of

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320
Hip said:
The results of this survey of ME/CFS patients show how common the various mechanical conditions are in patients.
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Or, without selection bias there was this study that looked at some mechanical conditions. An article about the study summarised

  • 56% demonstrated a Chiari Malformation, which is a herniation or bulging of the brainstem outside of the base of the skull and into the upper neck
  • A whopping 80% showed obstruction of the flow of cerebrospinal fluid (CSF), which provides oxygen and energy for the brain. Stagnation of CSF may cause fluid buildup in the brain, and lead to a condition known as “idiopathic intracranial hypertension,” which the researchers believe could be related to encephalomyelitis, aka brain swelling.
  • 50% of people exhibited hypermobility (i.e., excessive movement) between the C1 and C2 vertebrae in the upper neck
The article itself is here
https://www.frontiersin.org/articles/10.3389/fneur.2020.00828/full

there's a lot more in that article than summarised above too and they do compare to reports of prevalence in the general population (as a cheaper substitute to using their own controls)
 
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