Disappointed or maybe dismayed

mainstreetmarshall

Doctor says MRI doesn't show enough damage to intervene at this point. DW doesn't have the normal risk factors so there's nothing to treat or change at this point. WTF??? This is the most damning line from the MRI report:

 There is minimal bilateral periventricular and deep subcortical white matter disease compatible with chronic small vessel microvascular ischemic change.

Thoughts?

David J

I’m sure one or more of the MDs in the group will give a scientific answer, but to this layman it sounds like they don’t know. We went through several years of participating in studies, with MRIs, PET scans, documenting changes, etc., and no one could explain or give a definitive diagnosis. We finally got a dx of AD from the neurologist based on “observation”. I hope you get some answers soon.

Marta

MRI  cannot diagnose dementia.  That is done through neuropsych testing.

The MRI is done to rule out contributing factors.

Most MRI's I have looked at have changes in the white matter due to small vessel disease, to one degree or another, after a certain age.  These changes may contribute to vascular dementia (dementia due to repeated occlusions of small blood vessels that supply the brain).  This is best addressed through careful control of factors that injure small blood vessels, such as high blood pressure, high blood sugar, high cholesterol.  Anticoagulation with aspirin may be indicated.

mainstreetmarshall

Ahh good point. I guess Im just too caught up in the situation for detached evaluation. She failed the neuro tests, which is what caused the MRI to happen.

Tdrinker46

My DH’s doctor stated MRI showed normal age related deterioration (never checked it against one he had eight years prior).  DH was 78 at the time.  6 months later he was given in office tests that he could not perform because he didn’t understand what he was being asked to draw (his job Mechanical Design Engineer for medical equipment company + hobby painting portraits in watercolor, oil, and charcoal).  It was suggested he take drugs at that time but he was using alternative treatments to prevent memory loss (he didn’t admit any loss, this was preventative) and has problems with big Pharma.  Another 6 months pass and he is tested again cannot draw clock showing 3:45, cannot tell what doesn’t belong apple-banana-dog (for example), and a couple more question and answers.  Diagnosed with Alzheimers type dementia too advanced to be treated with drugs.  I had been questioning doctors for almost 10 years, I was overreacting.  

My advice, check with other doctors and trust your feelings and thoughts.  You know your loved one better than others. Trust yourself.

Quilting brings calm

Ask the doctor to prescribe one of the medications that are supposed to slow the dementia progress.  They may work or not, but it’s really the only treatment  when there are no physical abnormalities to fix. Also, make sure she’s taking medications for whatever physical conditions she does have ( blood pressure, etc).   

My Mom was told the chronic small vessel ischemic changes comment after an MRI 19 months ago.   The throwaway comment also said that the amount of brain atrophy was normal at her age. And beyond that we didn’t get much help in the state they were living in.  We got her back to our state where urosepsis was diagnosed and treated.  She improved some. Doctors on the first state automatically said dementia and missed the UTI.  Doctors here focused on the sepsis and wouldn’t say dementia.  Took several months to get that word out of them. She’s not had the major testing, just the clock, and both the shorter and longer question and answer testing. 

Our PCP thinks it’s stroke related, but it is a gradual decline rather than the stair step decline done associated with vascular dementia. 

Read the book the 36 hour day if you haven’t already. Get finances in order and a POA signed( if you can) Etc.  Welcome to our group. 

Jeff86

Marshall, 

Your post made me look back at my DW’s PET MRI scan from several years ago.

It was a far more devastating report, saying things like “Severe medial temporal lobar atrophy and correlating hypometabolism involving perirhinal and entorhinal cortices and hippocampi.”

But the relevant part for you:  “Extensive signal changes of the supratentorial white matter, reflects a combination of amyloid related angiopathy and chronic microvascular ischemic angiopathy.”

My DW’s dx includes brain aneurysms, AD, and cerebral amyloid angiopathy.  CAA is much less well known.  It involves small bleeds in the brain, which can lead to strokes, seizures, and so on.  It can cause AD-like symptoms, including memory loss, loss of executive functioning, and personality changes.

You might want to inquire of your DW’s neurologist whether this is a possibility.  There are no effective treatments for CAA, but there are recommendations including a Mediterranean diet and managing blood pressure, that may help delay adverse events.  What Marta said.  

May not be relevant for you—not looking to increase your anxiety, just offering a thought about how to best understand what may be going on with your DW.

Bhopper

Our situation was similar on the initial findings multiple non determined possibilities with no formal diagnosis outside small vessel white matter disease from CT. After multiple follow up MRI we were sent to MS clinic. shortly after 1st visit to MS clinic one Neuro-Rad found evidence of hemosiderin only because he agreed to speak with me after authorization from pcp did he explain to me what that meant was my DW had had bleeding at some point. several other professionals had missed the deposits he agreed to take the call from MS clinic and explain the location to others. After additional 3T MRI all agreed not MS referred to stroke clinic MB's unknown origin superficial siderosis with possible CAA. After follow up tests over 3 months  found shingles virus in spinal fluid had traveled to brain. treated the virus returned for 2nd spinal tap 9 weeks later virus no longer present. Her symptoms continued to slowly progress 2 years later large bleed (stroke) hospitalized & Rehabilitation 27 days total. Post hospital diagnosis changed to CAA as everything else had to be eliminated 1st. Sorry I took the long way around but the process on my DW diagnosis took 3 years to tell us what I feared in the beginning. I fully understand the anxiety and frustration of waiting on diagnosis in my case I like the doctors was looking for anything except CAA-AD. I wish you the best and pray for a positive outcome.

Kibbee

My husband's CT and MRI reports have noted the presence of White Matter Disease for the past 4 to 5 years.  I've asked his neurologist if it could be the cause of his problems but never got a definitive answer.  Recently, however, we've had a new development.  DH has been participating in a community therapy class for the past year and one of the physical therapists, who has observed him over time, suggested he may have Normal Pressure Hydrocephalus (NPH).  

NPH exerts pressure internally on the brain due to impaired drainage of cerebrospinal fluid (CSF).  NPH causes problems with cognition and executive function, and will interfere with gait / balance / coordination, and causes incontinence.  NPH can be underdiagnosed because medical providers look at the cognition issues and conclude the patient has dementia.    

NPH is diagnosed by (1) MRI to determine if the ventricles in the brain show changes due to increased amount of CSF (2) A complete Neuropsych evaluation and (3) Lumbar puncture to temporarily draw off some CSF, with a pre and post gait observation to see if the temporary reduction in CSF pressure in the brain improves gait / balance / coordination.  If a patient receives a positive diagnosis, there is a possible treatment for the condition.  A neurosurgeon will implant a ventriculoperitoneal shunt to enable the excess CSF to drain from the brain to the abdominal cavity, thereby normalizing the CSF pressure in the brain.  After implantation of the VP shunt, many patients experience improvements in symptoms. 

So far my husband has the had the MRI, which does show indications of NPH, and has completed a Neuropysch evaluation.  Lumbar puncture is scheduled next week.  

Iris L.

One of the member's here DH had NPH.  I forgot the name.  

FYI, Here is an article about leukoairiosis on MRI.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6047080/

Iris L.