FDG-PET Scan show hypoperfusion areas

[Frenchguy]

Hi everyone,

I received my Pet scan results yesterday and the report state :
The exam show several mild hypoperfusion areas
- precuneus
- bilateral occipital cortex
- primary occipital cortex : right
- right temporal cortex and mild left temporal cortex

My brain MRI is normal. I have attached the results.

What do you think about these results ?
My internist doctor can't interpret the results,

David

 

[RYO]

@Frenchguy You might find this youtube video helpful.

 

[andyguitar]

Well the results show that something is not right. But you really need expert advice about this. No offence to anyone on this website, but i dont think it's something that you should try to find out about from members of PR. Unless that is the only option.

 

[Frenchguy]

Thanks RYO for this good video.

Yes Andy. The problem is that I meet two neurologists during this year and any of them know how to interpret this test.

My internist doctor isn't knowledgeable on this subject and he seem difficult for him to find the great doc to interpret.

My wife sent the results to this boss who is medical practician. He sent the results to a friend who is neurosurgeon. We will see ...

With my little knowledges, the results suggest an hypometabolism state for the affected areas

David

 

[pattismith]

@Frenchguy You might find this youtube video helpful.

That's interesting, in this 2003 study, they show that 50% of ME patients had hypometabolism signs in some regions of the brain (glucose consumption decreased). the imaging test was the same as yours: FDG PET.

100% cingulate gyrus + adjacent mesial cortical areas
50 % orbito-frontal cortex
20% cuneus praecuneus

A correlation between hypometabolism and depression/anxiety/quality of life signs was found.

In fact, this imaging doesn't measure directly blood flow but it is expected that there is a correlation between glusose metabolism in a brain region and blood flow in this region.

in another slide he spoke about a patient example and showed a lateral temporo parietal cortex (bilateral) reduction

@Frenchguy , I would suggest to contact either Per Julin from Stockholm , or the scientist who did the scientific paper on the FDG PET in CFS:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1738575/

you are lucky that they did this test to you, it would be sad if you couldn't find anyone that could read it acurately!

 

[Frenchguy]

Hi @pattismith , thanks for your comment

I can give you info of the centre who perform this exam via pm if you want.

Now the "problem" is that the CHU hospital who reinfuse the blood after photopheresis want that my case must be "staffé a nouveau" before I begin photopheresis...

I will try to send my exam result to the scientist,

David

 

[pattismith]

Hi @pattismith , thanks for your comment

I can give you info of the centre who perform this exam via pm if you want.

Now the "problem" is that the CHU hospital who reinfuse the blood after photopheresis want that my case must be "staffé a nouveau" before I begin photopheresis...

I will try to send my exam result to the scientist,

David

Hello David, do they want you to perform a new FDG PET? I read in the slide show that it is dangerous to do more than one per year (radioactivity)

 

[Frenchguy]

@pattismith No, they just want to discuss my case because they haven't seen a case like mine in several year of medicine

 

[jpcv]

@Frenchguy , there is some data on the use of SPECT in ME, showing hypoperfusion áreas, that´s another way to measure what´s going on. Probably hypoperfusion= áreas with low glucose metabolism,
Dr Hyde described this findings many years ago.
Not many doctors understand ME, that´s why they don´t know what to do, in fact this exam shows you´re sick( you already knew that) but doesn~´t give any useful information about treatment.
There are some reports from patients using Nimodipine, a drug that enhances CNS blood flow, but this is not a aproved treatment.

 

[pattismith]

@Frenchguy , there is some data on the use of SPECT in ME, showing hypoperfusion áreas, that´s another way to measure what´s going on. Probably hypoperfusion= áreas with low glucose metabolism,
Dr Hyde described this findings many years ago.
Not many doctors understand ME, that´s why they don´t know what to do, in fact this exam shows you´re sick( you already knew that) but doesn~´t give any useful information about treatment.
There are some reports from patients using Nimodipine, a drug that enhances CNS blood flow, but this is not a aproved treatment.

ME/CFS is not the only disease with hypometabolism areas in the brain, so David will really need a specialist to interpret his test...

 

[Frenchguy]

ME/CFS is not the only disease with hypometabolism areas in the brain, so David will really need a specialist to interpret his test...

Yes. I have all the symptoms of this disease but my case is a little strange.

The beginning symptoms was severe dry eyes not responsive to any eyedrop or immunosuppressant. Then, the constant and severe head pain unresponsive to any pain medication.

My blood work is a little strange to, with a antinuclear antibody who varies, 1/40, then 1/80, then 1/40 and a CD8 lymphocytosis with an inverted CD4/CD8 ratio at 0,69.

David

 

[kangaSue]

Yes. I have all the symptoms of this disease but my case is a little strange.

The beginning symptoms was severe dry eyes not responsive to any eyedrop or immunosuppressant. Then, the constant and severe head pain unresponsive to any pain medication.

My blood work is a little strange to, with a antinuclear antibody who varies, 1/40, then 1/80, then 1/40 and a CD8 lymphocytosis with an inverted CD4/CD8 ratio at 0,69.

David

Has Sjogren's Syndrome been tested for? It can also involve brain hypoperfusion and it wouldn't be the first time that someone had previously had a diagnosis of ME/CFS before there was enough antibody evidence of determine it to be Sjogren's.

 

[Dechi]

According to Dr Hyde, you don’t have ME if you don’t have hypoperfusion to the brain. He uses SPECT scans on his patients. I am one of them and I have moderate to severe hypoperfusion to many areas of the brain.

Dr Hyde works with Dr Sonia Neubauer, in Chile. She interprets the SPECT scans. She is a nuclear medicine doctor if I remember correctly. I don’t know if she could interpret a PET scan but you would have nothing to lose by asking. She only needs a CD of the scan sent to her and you get the results in about 3-4 weeks.

 

[andyguitar]

This sounds a bit different from what I would expect in either ME or CFS. I cant put my finger on it but would not be suprised if @Frenchguy has something other than ME/CFS.

 

[Frenchguy]

Has Sjogren's Syndrome been tested for? It can also involve brain hypoperfusion and it wouldn't be the first time that someone had previously had a diagnosis of ME/CFS before there was enough antibody evidence of determine it to be Sjogren's.

I have been extensively tested for sjogren with lip and lacrimal gland biopsy. Findings are negative

 

[Frenchguy]

According to Dr Hyde, you don’t have ME if you don’t have hypoperfusion to the brain. He uses SPECT scans on his patients. I am one of them and I have moderate to severe hypoperfusion to many areas of the brain.

Dr Hyde works with Dr Sonia Neubauer, in Chile. She interprets the SPECT scans. She is a nuclear medicine doctor if I remember correctly. I don’t know if she could interpret a PET scan but you would have nothing to lose by asking. She only needs a CD of the scan sent to her and you get the results in about 3-4 weeks.

I think hypometabolism areas are similar to hypoperfusion areas

 

[Dechi]

I think hypometabolism areas are similar to hyperfusion areas

@Frenchguy you mean hypoperfusion ? There is also hyper perfusion in my brain but it’s not considered a problem.

My idea of hypometabolism is that it affects every cell of the body, not specific cells or areas.

 

[pattismith]

and a CD8 lymphocytosis with an inverted CD4/CD8 ratio at 0,69.

David

a CD8 lymphocytosis can mean inflammation and/or infection

Here is a link showing that CD8 can have some bad effect on brain inflammation (in french!):

https://www.medecinesciences.org/en.../medsci2015318-9p748/medsci2015318-9p748.html

What is your CD4 count?

 

[Frenchguy]

@Frenchguy you mean hypoperfusion ? There is also hyper perfusion in my brain but it’s not considered a problem.

My idea of hypometabolism is that it affects every cell of the body, not specific cells or areas.

Yes @Dechi , sorry, I would say hypoperfusion, I have edited

a CD8 lymphocytosis can mean inflammation and/or infection

Here is a link showing that CD8 can have some bad effect on brain inflammation (in french!):

https://www.medecinesciences.org/en.../medsci2015318-9p748/medsci2015318-9p748.html

What is your CD4 count?

I don't recall my CD4 count but it was normal. My CD8 count was 1260 4 months after the beginning of the disease.

Thanks for the link @pattismith

 

[pattismith]

I don't recall my CD4 count but it was normal. My CD8 count was 1260 4 months after the beginning of the disease.

Thanks for the link @pattismith

it means a CD4 number of 869 which is ok.
CD8 lymphocytosis can be induced by EBV, CMV, HSV, HHV6, toxoplasma and human T-cell lymphotropic virus, and HIV.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2737771/

Do you know about your Natural Killer cells? (CD56)