Normal MRI?

[Boudica]

Hi, I don't want to list all of my symptoms (would probably forget some anyway), but I will list what my PCP and neurologists have said is wrong with me.

First, it was trigeminal neuralgia; epilepsy (PCP). Next, it was ataxia (PCP). Then, possible MS (PCP and neuro) which quickly turned into conversion disorder. Most recently, it was neuropathy (PCP) and then it was epilepsy again with travelling paresthesias. Finally, it was labyrinthitis. I was given Keppra to take and told to keep taking it even though it did nothing for fatigue or dizziness. However, it made my muscles feel less tight.

I had an MRI in 2017 which showed lesions that the radiologist suggested demyelinating disease should be ruled out due to pattern and my age. At that time I was told that since my C-spine was clear it was not MS. Later in 2017/early 2018, I had another MRI and lumbar puncture. The report said it was stable, but said there were black holes. Lumbar puncture had only 2 CSF-specific O-bands, none in blood. Oh, and vitamins, Lyme, etc., etc., all ruled out. So, that's when I was told it was a conversion disorder, but I went a psychiatrist to rule that out which they did.

As you can imagine, I just stopped looking for answers until late last year. Mostly because I have issues with what I describe as sensory overload and have difficulty driving especially at night, and I want to get a job out of the home. Epilepsy with travelling paresthesias was his first diagnosis. Then, I had an MRI and took a disc of an MRI in to them. They told me they didn't have the software to read it! So, he used the report and basically said well the spots on your brain are probably these same ones they talk about. It's normal.

The problem I have is, the latest MRI report mentions several periventricular lesions and several in the corpus callosum and says MS related abnormality. The one before only mentioned subcortical lesions and cortical U-fiber enhancement.

I sent a message to his office via my patient portal asking if the ones he pointed out to me where in the corpus callosum or U-fiber areas. His assistant messaged me back that she talked to him and he said the MRI is normal, and that if I had more questions to schedule an appointment.

I know that Dr. Google is a terrible thing, but after my research it doesn't sound like corpus callosum lesions are "normal" for people without something going on with regard to the CNS. Does anyone have any thoughts or suggestions?

Thank you!

[NHE]

Hi, I don't want to list all of my symptoms (would probably forget some anyway), but I will list what my PCP and neurologists have said is wrong with me.

First, it was trigeminal neuralgia; epilepsy (PCP). Next, it was ataxia (PCP). Then, possible MS (PCP and neuro) which quickly turned into conversion disorder. Most recently, it was neuropathy (PCP) and then it was epilepsy again with travelling paresthesias. Finally, it was labyrinthitis. I was given Keppra to take and told to keep taking it even though it did nothing for fatigue or dizziness. However, it made my muscles feel less tight.

I had an MRI in 2017 which showed lesions that the radiologist suggested demyelinating disease should be ruled out due to pattern and my age. At that time I was told that since my C-spine was clear it was not MS.

That's not a distinguishing characteristic for MS. Have you seen an MS specialist?

Later in 2017/early 2018, I had another MRI and lumbar puncture. The report said it was stable, but said there were black holes. Lumbar puncture had only 2 CSF-specific O-bands,

Which indicate that you have inflammation in your CNS.

none in blood. Oh, and vitamins, Lyme, etc., etc., all ruled out. So, that's when I was told it was a conversion disorder, but I went a psychiatrist to rule that out which they did.

As you can imagine, I just stopped looking for answers until late last year. Mostly because I have issues with what I describe as sensory overload and have difficulty driving especially at night, and I want to get a job out of the home. Epilepsy with travelling paresthesias was his first diagnosis. Then, I had an MRI and took a disc of an MRI in to them. They told me they didn't have the software to read it!

This is odd. Every imaging disc I've looked at, whether it was an MRI, x-ray or CT, has come with software to read the images. You can also use a program called IrfanView and view MRI images after installing the appropriate plugins. https://www.irfanview.com/

So, he used the report and basically said well the spots on your brain are probably these same ones they talk about. It's normal.

The problem I have is, the latest MRI report mentions several periventricular lesions and several in the corpus callosum and says MS related abnormality. The one before only mentioned subcortical lesions and cortical U-fiber enhancement.

Yes, periventricular lesions are quite common in MS.

I sent a message to his office via my patient portal asking if the ones he pointed out to me where in the corpus callosum or U-fiber areas. His assistant messaged me back that she talked to him and he said the MRI is normal, and that if I had more questions to schedule an appointment.

I know that Dr. Google is a terrible thing, but after my research it doesn't sound like corpus callosum lesions are "normal" for people without something going on with regard to the CNS. Does anyone have any thoughts or suggestions?

Thank you!

Have you seen an MS specialist? If not, then try getting a referral. Note that an MS diagnosis is typically based on the McDonald Criteria. https://radiopaedia.org/articles/mcdona ... -4?lang=us The Radiopaedia site also has a large database of MR images you can view. Compare "normal brain" MRI to MS MRI.

[Scott1]

Hi,
I agree with NHE. There is something quite haphazard about the decision making process you have been subjected to.
Keppra is a 'newish' epilepsy drug. Some doctors think it is the answer to everything and others know nothing about it. Be very careful about how you come off it. Doing that the wrong way can create a lot of problems. One of its side effects is dizziness and balance problems. If you feel that it may be contributing to unsteadiness since you've started, do a search for "FDA" + "Keppra" and find the manufacturers notes. Find the section on side effects and show it to your doctor (ideally a new doctor). Do not suddenly stop using Keppra. That is dangerous.
If possible, I would begin again with a new circle of medical advisors. What has happened to you is not impressive.
Regards,

[NHE]

Have you seen an MS specialist? If not, then try getting a referral. Note that an MS diagnosis is typically based on the McDonald Criteria. https://radiopaedia.org/articles/mcdona ... -4?lang=us The Radiopaedia site also has a large database of MR images you can view. Compare "normal brain" MRI to MS MRI.

Here are some examples...

Normal Brain MRI: https://radiopaedia.org/cases/normal-br ... -4?lang=us

MS MRI: https://radiopaedia.org/cases/multiple- ... 40?lang=us
(with periventricular lesions)

Here are many more MS MRI cases. https://radiopaedia.org/search?lang=us& ... cope=cases

[Boudica]

Thank you for replying. To be clear, none of those diagnoses stuck.

I just had an appointment yesterday due to a blacking out event. The neuro still maintains a history of labyrinthitis. He also said he didn't want to give me anything for epilepsy until he is sure I have it. HA! He already gave me Keppra! He also argued that I do not have any CNS inflammation when he has the lab results. In fact, he straight up told me that there was nothing going on--no CNS inflammation and no demyelination and said that in my visit summary too. What he did tell me was that it might be "the change of life". I'm 40, okay, so that's been going on since my mid 20s? Long change, right?

Thank you for the advice. It took a while but I finally found an MS Specialist and have been in contact with his office to try to get a consult ASAP. Hopefully, this will result in some sort of tangible, reasonable answer.

[Scott1]

Make sure you tell your new man that you are on Keppra.