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Doctor Said Brain MRI is Normal But It's Not

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Posted 8/11/2022 7:46 PM (GMT -5)
Had a brain MRI done for vestibular problems, and today the ENT said it was normal. However, when I looked at the report at home, it wasn't normal. Maybe someone understands what this means:

Multiple chronic microhemorrhages throughout the brain.
Mild microanglopathic white matter disease

From what I've read, neither is very treatable and the microhemorrhages are something to be very concerned about. Maybe this goes beyond the realm of Lyme, but just wondering if anyone knows much about these.

I've been dizzy, which I thought was Sjogrens/neuropathy related or inner ear, but inner ear nerves look fine, even though I've lost hearing some. I'm also convinced the anxiety in mornings is autonomic dysfunction related and may be having an impact on this.

Very tired and also very tired of tests always coming back with a concern or verified problem.
Posted 8/11/2022 7:53 PM (GMT -5)
I literally just found this website for a fellow HealingWell member. It allows you to upload your MRI and a doctor will give you a second opinion for a fee. No visit needed, all online. You can even pay for a phone consult:

https://www.xmri.com

Maybe it's not needed though if we have members who know more about this stuff than me.
Posted 8/12/2022 11:33 AM (GMT -5)
Rainy - Thanks for the link. I was going to go ahead and use it but the neurologist I now see is fitting me in today to look at the disc with images and the original report. Really stressed over this.

Your help is always appreciated. I may be over-reacting but just didn’t want to deal with another problem as there is now so much going on with Lyme, Sjogrens, kidneys, dizziness, inner ear and now this. Just overwhelmed a bit and worn down from years of all this sheite.
Posted 8/12/2022 1:37 PM (GMT -5)
“ Just overwhelmed a bit and worn down from years of all this sheite.“

running wild - I’m so sorry that you haven’t made much headway with your treatments.
You deserve a break!

Wish there was something I could do to help you.
Posted 8/12/2022 3:08 PM (GMT -5)
most of us that have had mri : reads white matter lesions and minor ischemia associated with ms or ai . i believe its the start of borrelia sequestering and building biofilm plaques alan macdonald identifies as 9/10 alz brains have this .

i know bv is the only substance proven to decimate borrelia biofilm.(sapi) also i am confident that zhangs allicin does easily cross the bbb due to small particle size . iv roceph did nothing for cns symptoms .
id like to get another one now that i have a few years of treatment under my belt
Posted 8/14/2022 5:25 PM (GMT -5)
Thanks for those that responded. This is a good lesson in the frustrations most of us have been through dealing with Lyme and test results.

On Friday I called the new neurologist I just started seeing to make an appointment as soon as possible. When I told the nurse the reason, she said "we need to get you in here today to see what's going on." Got there at 3:00 pm and they worked me in. Took over two hours to be seen, but I didn't mind. The doctor stayed until 5:40 talking with me and looking at the report and then the brain scan.

She explained a lot then showed where there the brain bleeds that were on the report as "numerous, multiple, scattered throughout the brain." Turns out, as much as she looked and looked, she could only find two, which is not incredibly out of the norm for someone my age, not that you want any. Also, she said the white matter was very few and normal for age.

I've been through this with doctors worrying about Lukemia. Same with Lymphoma. Have had two bone marrow biopsies done. The worry it puts one through is incredible, as many of you know. In this case, it was totally misread, as the tech (according to my doctor) probably misread vessels for micro bleeds.

Obviously good news, but I have learned through the years I have developed this bad fear of waiting on test results or panicking before I get a second opinion. To me, it's a form of PTSD after years of being told nothing is wrong when I knew something was (11 years to get a Lyme diagnosis).

Sorry so long.
Posted 8/15/2022 6:54 AM (GMT -5)
I am relieved that it really isn’t as bad/scary as the tech made it out to be…

I can sympathize as I have had “bad news” during this lyme ordeal as well.
But nothing became of my “diagnosis “ - and it’s been over 5 years now …
Posted 8/15/2022 11:54 AM (GMT -5)
glad to hear its not overly alarming news RW

i would just add that to some extent if you tested everyone on this forum with all the many test s that are available - many of us would come back throwing up lots of abnormal test results - and the more we test - in anyone with chronic lyme - hormones, bloodwork, cytokines, gut issues, organ function, MRI's etc etc the more we are likely to find

the way i would look at that is - that the test results do not really mean we are sicker than we were before the test
just that the more we dig, in a condition like this with far ranging effects, the more we will be likely to find.
it does not necessarily mean you are sicker or more hopeless a health case than other lyme sufferers who have lots of similar symptoms - but have not pursued all the additional testing - and many of these people have got better.

i only say this to try to help counter the effect of what is otherwise likely to become an increasing focus on testing and problems - leading to more testing and more focus on problems - which can become a spiral of stress and anxiety and a focus predominantly and increasingly on the negatives - which can ruin what life you do have..

so i would say - if this additional testing is not directly helping you move forward - but just labelling things that were already happening with a list of new diagnoses - then, as far as you can, perhaps put the testing to one side and try to move forward with actions that can help your health move foreword.

from memory you have a list of infections incl lyme and TBRF and maybe bart - and these are more than likely driving all the other stuff - so if you can take steps to start to move forward with addressing the infections many of the other things may be improved

conversely - i think trying to treat the downstream diagnoses individually - esp with conventional specialist - while the infections are ongoing - is likely to be much less effective and frustrating.

this is just my perspective - i am as you know not a doctor - but hoping its of some help - as i know how confusing and frustrating it can be trying to find a path forward.

all the best
G
Posted 8/16/2022 8:45 PM (GMT 0)
Glad to know nothing became of the diagnosis from 5 years ago, girlie. Sorry for whatever it was as things like that bring up un-needed stress.

Garzie - the only reason I had the brain MRI was because of the hearing problem that developed at my son's wedding. They were looking for nerve damage but it included observations of the brain, which I had gone into not even thinking or worried about.

The LLMD I see wants me to treat infections more to see if that is what is pushing the Sjogrens. I have noticed I feel worse after taking houttuynia, so I'm taking a day off from that to see if it is causing a reaction, which would indicate yes, the Bart is there.

The big question is just that - are infections making Sjogrens worse, or is Sjogrens doing its own thing.

Over the years, I now see no one mentioned how the infection can lead to other issues.
Posted 8/16/2022 3:48 PM (GMT -5)
“ so i would say - if this additional testing is not directly helping you move forward - but just labelling things that were already happening with a list of new diagnoses - then, as far as you can, perhaps put the testing to one side and try to move forward with actions that can help your health move foreword.“

Good common sense advice!
Posted 8/16/2022 4:07 PM (GMT -5)
“ Glad to know nothing became of the diagnosis from 5 years ago, girlie. Sorry for whatever it was as things like that bring up un-needed stress. “

I had a lot of mri’s done pre Lyme diagnosis due to unrelenting mid back pain.
One of the mri’s showed a syrinx in my thoracic spinal cord.
The prognosis was that it would expand over time and I would likely eventually be in a wheelchair and have no use of my legs.

I had a few follow up mris over a couple years and it hadn’t expanded yet.
I lived with the the fear until I did some research and found that when we are born we have a slit in our spinal cord that is supposed to go away over time - but with some people it doesn’t.
It’s called a “persistent central canal”
I “decided” that’s what I had.
It removed my fear.

And here I am over 5 years later with no issues.
I haven’t had any recent mri’s to check the “syrinx”
I have full use of my legs -
Posted 8/16/2022 4:30 PM (GMT -5)
Wow! I had never heard of that. Seems it would have helped if you had been provided with more information about the other possibility. That's a point about doctors I won't rehash. There are so many "had I knowns" so many with Lyme and other diseases have experienced. The mental aspect is rarely considered by doctors.

That's why there is the persistent "digging" by those with Lyme. The problem is, my mind will dig a hole too early.
Posted 8/17/2022 7:45 AM (GMT -5)

running wild said...


The big question is just that - are infections making Sjogrens worse, or is Sjogrens doing its own thing.
.

please don't take offence RW - but I am struggling to figure out why this is such a big question in your mind.

Lyme and all intracellular infections cause auto-immunity of many different sorts - probably all other biofilm forming chronic infections do too.

you have this type of infection - so surely this makes it highly likely that the infections are driving the auto-immune processes - no?

just trying to help simplify things

as, if as you say, you are prone to digging a hole for yourself - this can become a never ending spiral of back and forth and worry.

better to opt for one side or another and move on - a bit like Girlies example - considered the evidence - then chose a position to believe - then went forward on that basis.

wright or wrong - it counteracts endless worry - allows you to make a plan - and its better for ones wellbeing.


hope its of some help
all the best
Posted 8/17/2022 11:11 AM (GMT -5)
You “talked” to me like my mom, so no offense taken smile. The other part is I do seem to get a reaction from just a little Houttuynia.

Also have emailed Rainy Cloud about how to mix the Bicillin I received.

As you mentioned, it has to be the infections pushing this. Just get caught up in the weeds. Thanks for your honest thoughts.
Posted 8/17/2022 1:12 PM (GMT -5)
Bicillin sounds like a good plan to me RW

good luck and keep us posted
Posted 8/19/2022 6:10 AM (GMT -5)
Hi running wild, I have responded to your email just now, sorry for the delay.
Posted 8/28/2022 12:57 PM (GMT -5)

bluelyme said...
most of us that have had mri : reads white matter lesions and minor ischemia associated with ms or ai . i believe its the start of borrelia sequestering and building biofilm plaques alan macdonald identifies as 9/10 alz brains have this .

https://www.science.org/content/article/potential-fabrication-research-images-threatens-key-theory-alzheimers-disease

Seems like Alzheimer theory/science is most likely fraudulent....
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