Do Dysautonomia Patient's Brain Mri's Look Different?

[comfortzone]

Good Morning everyone....

I've been paying attention to the posts here lately that talk about how dysautonomia blood flow is/can be less than optimal due to pooling in different places/spaces in the body.......

But I lack a basic understanding...... Is it enough that the brain would actually perhaps suffer some ischemic changes? I'm not yet diagnosed - but hope to be soon -- for a unique set of symptoms that came after back to back knee replacements.

If I had to guess - I believe I have the hyper adrenergic type symptom group with orthostatic hypertension......a baseline hypertension as well -- and a labile b/p - with prolonged standing I get dips in blood pressure with dizziness.

My MRI states

Several punctate foci of increased signal present within the juxtacortical white matter of both the frontal lobes as well as within the anteriour aspect of the left parietal lobe. None of these enhance nor show mass effect, edema, or restricted diffusion. They are extremely nonspecific in nature. Differential considerations include postischemic, post infectious/inflammatory, and posttraumatic etiologies. Although dysmyelinating disorders and vasculitis are in this differential they would be considered much less likely.

From my limited perspective it sounds like they are not so much worried about MS though it's a very remote possibility. Personally I have no recollection of any brain injury, and I have no autoimmune or inflammatory diagnosis on board - nor have I ever suffered with some kind of known encephalitis of brain affected infection.

So that leaves ischemia. I guess hypertension could fit in there some how? Or my age is 53 - maybe that? Or maybe my blood pools and leaves my brain starving for more oxygen?

My mental functioning since the surgeries includes me becoming very upset and irritable at losing everything I touch. I lose everything and I have trouble remembering, focusing and concentrating.....I rarely read anymore and have lost interest in a lot of fun recreation activities. I can live with it - and have to loss proof my house -- I always have to keep vigilant to not forget or lose important things....And when I do - well I do the St. Anthony prayer!

Tony, Tony look around.....something's lost and must be found! <=== Catholic upbringing for sure ;-)

Thanks in advance for any insights you may have - any anecdotal incidents/insights you share will be valuable!

nowwhat! :-)

[MightyMouse]

Typically, no, the patient with dysautonomia has no MRI abnormalities aside from the same variations seen in the general public. This is at least the case with research so far. There is some evidence that cerebral blood flow is compromised during a syncopal episode, but once flat, blood flow should be normal (based on fMRI) and hemodynamic studies (studies of blood flow).

Nina

[TXPOTS]

I've had MRIs, MRVs, and MRAs. They have all been completely normal. I have not read any research suggesting brain abnormalities/ ischemic changes are typical in patients with dysautonomia.

[Birdlady]

My MRI's have always been normal too.

[nmorgen]

My MRIs and MRA were all normal. Sorry I can't be of more help. I hope you get a diagnosis and start to feel better.

[Mary P]

Me too, a brain MRI in 2009 and a follow-up one this past Feb. showed no abnormality.

Mary P

[houswoea]

My MRI and CT scans were normal except for mild chiari malformation. Nothin else. I'm 20

[toddm1960]

My MRI was normal also, it was one of the earlier tests I had, well before getting diagnosed. I hope you find some answers, and start to feel and function better.

[issie]

Nowwhat?

It looks like you and I are the only ones coming up with this white matter issue and brain dysfunction. Still don't know what mine means either. However, they did find a brain tumor on me also that is in the lining of the brain. But, I swear it is affecting me and my memory. Also, I've had two TIA, which are the mini strokes that can't be detected on the scans, but give you the symptoms of a stroke and in my case has caused me to not be able to do math. This is real bad because, I was a book keeper. It hasn't gotten much better either and it's been 2 years now. I have to have MRI, MRA's every year to watch the tumor and hope that some more things will come to light. Also, I have Chairi 0 with a little over a 3mm drop. I think the compression of my spine with the arthritis and the Ehlers Danlos affects the blood flow and the brain function too. But, that's just me thinking. Also have severe sleep apenea and think that lack of oxygen has an impact. Guess we just have to wait for science.

Edited August 16, 2010 by flop
Quotation removed, please ues the "add reply" button at the bottom of the page

[comfortzone]

Hmmmm......... I truly thank you - all that wrote about this. I know I did read 2 posts a week or so ago that made reference to brain fog related to the way a POT's symptom person moves and pools blood........but I gather it wasn't you guys....... Maybe yes it's only briefly when the person hasn't yet been able to make their way to lying flat.....I do have to do that a lot........I literally as many of you have to break the day up into little thirds or so .... activity......lay down........activity.........lay down........for two years -- out of the blue....

Sigh........ Yes Issie I guess we are the EDS piece of this perhaps......... I'll have to get researching more before I get to Mayo to see if I can see what differential diagnosis include these weird findings that might fit........

Maybe they'll do a sleep study there and see if I'm ischemic from some kind of apnea issue ... tho it would surprise me...... but maybe most single people are surprised about apnea cuz no one can hear their issue lol....

Well I guess the good news is that you guys have good healthy brains..........and when you feel like you do with PoT's etc......anything at all that's normal on exam is a blessing ... Continued healing and peaceful days and nights to each of you and thanks again so much!

[momdi]

I don't know about MRI, but I think the PET/SPECTs might be different. When Michael was being (mis)diagnosed with a seizure disorder, they did these tests, and found areas of low perfusion. At that time, they felt that was the location of his so-called partial seizures.

When we mentioned this to Dr. Low at Mayo, he agreed that this would be likely with POTS. If I recall correctly, he indicated that there is a physiological shunt going on in POTS that takes the blood flow away from certain areas of the brain and helps to account for the brain fog.

PET measures glucose metabolism, so it's more a measure of functional than of a structural abnormality.

Dianne

[TXPOTS]

Dianne,

That's very interesting indeed. Thanks for posting. I am being referred for some possible metabolic changes that may be from hypoxia or vice versa. I will be interested to see if PET/SPECTs are used more for research purposes or to diagnosis POTS.

[juliegee]

Nowhat!

You are correct. Dysautonomia causes MAJOR cognitive issues. I think the previous posters were just commenting on their MRI's. Many of us are very forgetful, have intermittent trouble learning, reading, focusing, etc. You are in good company there. If you think your memory problems are becoming more severe, I would follow-up with a neurologist just to be safe.

I put yellow stickies all over the house to remember things. On the backdoor is a favorite place, especially if I'm supposed to be picking up someone else's child- something I CAN'T forget. I have totally forgotten where I am for a few L-O-N-G second while driving around town on my regular beaten path- very scary.

I will ask to see my next MRI report as I am learning that docs don't always tell us everything to check about the white matter. Mine have revealed a pineal cyst and microadenomas- not related to dysautonomia.

I lOVE your "Tony, Tony Prayer" and plan to use it the next time I lose my keys, etc.

All the Best-

Julie

[toddm1960]

Nowwhat, Mack'sMom is correct I didn't mean to make it sound like I don't have cognitive issues.....my memory is called "POST-IT" I leave notes all over also. It makes me feel so much better someone else has those "lost" moments driving in town, or forget how to get somewhere you've been to thousands of times, it is very scary. So I do have have all of the same problems....just a clean MRI. Let us know if you find out anything more.

[sue1234]

I also have no abnormalities of the brain that show up on MRI.

I have so many notes all the time, they look like house clutter! Then, they just get overlooked, too.

[nunntrio]

I don't know about MRI, but I think the PET/SPECTs might be different. When Michael was being (mis)diagnosed with a seizure disorder, they did these tests, and found areas of low perfusion. At that time, they felt that was the location of his so-called partial seizures.

When we mentioned this to Dr. Low at Mayo, he agreed that this would be likely with POTS. If I recall correctly, he indicated that there is a physiological shunt going on in POTS that takes the blood flow away from certain areas of the brain and helps to account for the brain fog.

PET measures glucose metabolism, so it's more a measure of functional than of a structural abnormality.

Dianne

Interesting. I have actually had a SPECT scan done (they did this looking for something else) and it showed a "mild pattern of global Hypoperfusion". My most significant symptom by far is brain fog. What exactly in a physiologiacal shunt? I have also had an MRI that was clean.

[issie]

I'm confused too as to the terminology he used. Because a physiology shunt has to do with the heart, not the brain.

[momdi]

I'll quote the great guru, wikipedia, about shunting:

A pulmonary shunt is a physiological condition which results when the alveoli of the lung are perfused with blood as normal, but ventilation (the supply of air) fails to supply the perfused region. In other words, the ventilation/perfusion ratio (the ratio of air reaching the alveoli to blood perfusing them) is zero.[1]

They describe a shunt in the lungs, but a shunt can occur in other tissues, such as the heart or the brain. The bottom line is that there is blood flowing to the area (perfusion), but the exchange of oxygen and CO2 is not happening (ventilation). The tissue is just not being fed.

Since the PET shows the working of the brain by showing glucose metabolism, the poor oxygenation would show up as hypo-perfusion or hypo-metabolism.

I'm a nurse, but certainly not a neurologist (not even a neurology nurse so that's the best explanation I can provide.

You can have a physiological abnormality, which would show on an MRI, or a functional abnormality, which would show on a PET, or both, or neither.

Dr. Low's explanation made sense to us in light of Michael's abnormal PET/SPECT scans - which have no other explanation. BTW, his MRIs were normal. At least in junior high.

Dianne

[comfortzone]

Got back from the Scottsdale Mayo Clinic and the first day was truly amazing in good ways. Dr. Brent Goodman has to be one of the most intelligent physicians I have had the pleasure to meet or work with (& I'm a nurse for 24 years!) He listened in spite of being busy - very patiently to my long story and different symptom groups.....and came up with a plan. I'll have testing over the next 3 or so days....

Some I'm not familiar with and some I am....

A glucose tolerance test - interesting I know what it is ...

An MRI of the pelvis/hips because I am weak there

Autonomic Reflex Testing ARS - not sure but I think it's a 2 part test? One being the quantitative sudomotor axon reflex test and the other measures heart rate and b/p while on a table that moves upright.... is that a tilt table test?

A re-do of all my EMG's

Endocrine Testing

Nephrology consult for the labile B/P

Repeat of rheumatology labs - maybe a consult if needed

I was so stressed and destabilized by the last neuro telling me it was 'counseling' I needed to help with my fatigue - that I was pretty anxious about going today - and here it turns out he's simply marvelous........so smart!

Mayo clinic was also today an amazing stream of efficiency and kindness all around......so we'll see how these next days go - EVEN if they find nothing - much good is done by being respected and cared for with professionalism and sincerity! I can't thank you all enough for the suggestion to see him!

[comfortzone]

Oh and he's ordered a biopsy as well - though I don't know what of - in the neurology department -- forgot to mention that.... Okay time to EAT......tomorrow is a day with mostly NOT eating.... Have a good evening everyone!

[nunntrio]

I'll quote the great guru, wikipedia, about shunting:

A pulmonary shunt is a physiological condition which results when the alveoli of the lung are perfused with blood as normal, but ventilation (the supply of air) fails to supply the perfused region. In other words, the ventilation/perfusion ratio (the ratio of air reaching the alveoli to blood perfusing them) is zero.[1]

They describe a shunt in the lungs, but a shunt can occur in other tissues, such as the heart or the brain. The bottom line is that there is blood flowing to the area (perfusion), but the exchange of oxygen and CO2 is not happening (ventilation). The tissue is just not being fed.

Since the PET shows the working of the brain by showing glucose metabolism, the poor oxygenation would show up as hypo-perfusion or hypo-metabolism.

I'm a nurse, but certainly not a neurologist (not even a neurology nurse so that's the best explanation I can provide.

You can have a physiological abnormality, which would show on an MRI, or a functional abnormality, which would show on a PET, or both, or neither.

Dr. Low's explanation made sense to us in light of Michael's abnormal PET/SPECT scans - which have no other explanation. BTW, his MRIs were normal. At least in junior high.

Dianne

Thanks for your explaination. I understand it at least on a basic level. So you mind if I ask a few more questionsDo not know why the ventilation (exchange in oxygen and CO2) is not happening? Also, I understand the difference between a PET scan and a MRI but is there a difference between a PET and a SPECT?

Thanks!

[momdi]

nunntrio,

Sorry, don't know the diff between SPECT and PET, though Michael had both. I think they both have something to do with function, and both are quite different from MRIs.

nowwhat,

Happy to hear that you are liking Mayo and Dr. Goodman. If you see him again, say "hey" from Michael and family, former patients in Scottsdale. Michael is the 28 year old male whose heart had many sinus pauses at night. And we MISS HIM. Have not found a replacement yet. Sigh. Are thinking of maybe making the trek to see him at Rochester. Ugh. The trek, not him.

He is the most incredibly patient doc I've ever met. And pretty sharp. Hoping that he tells you something useful.

Dianne

[comfortzone]

Hi Dianne ~

I just wanted to mention that Dr. Goodman is back in Scottsdale - just recently. Did you know that? I was one of the first to get an appt. upon his return from the great white north LOL.... I think his schedule is a bit more open than usual as he just came back. When I scheduled in mid July not even the staff at Mayo in scheduling knew that he was back..... So if I read your note right you weren't aware of this? Anyway I agree the man is simply a gem among gems......thank you for the well wishes too!

[MomtoGiuliana]

When my POTS was severe I had cognitive issues--which have greatly been restored since some good recovery. I had MRI's that were all normal.

[mkoven]

I have multiple, small white matter hyperintensities. They appear to be stable across several years. I was told they are non-specific. Not sure where they come from. Until 2008, I had untreated sleep apnea. I've also been told that migraine sufferers tend to have more of these. I'm only 43 and these were found when I was 38 while being scanned for something else, not related to my ans issues.