FDG-PET Scan show hypoperfusion areas

pattismith

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Hello @Frenchguy ,

I was thinking of you, did you benefit from your week in hospital?

i hope your doctors find a cause to your problems and a way to solve it.

If not , I would suggest you to give me your extra CD8 (I'm too low!):)
 

pattismith

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I found this study, and was wondering if it could be relevant to fight your lymphocytes activation:

Differential Inhibition of T Lymphocyte Proliferation and Cytokine Synthesis by [6]-Gingerol, [8]-Gingerol, and [10]-Gingerol
Authors
July 2015
  • Abstract
    [6]-Gingerol, [8]-gingerol, and [10]-gingerol are pungent components of fresh ginger, extracts of which inhibit various components of the inflammatory response. Because little is known regarding the effect of gingerols with different unbranched alkyl side chain lengths on the activation and effector function of T lymphocytes, we compared the effects of [6]-gingerol, [8]-gingerol, and [10]-gingerol on murine T lymphocyte proliferation, expression of CD25 and CD69 activation markers, cytokine synthesis, and interleukin (IL)-2 receptor signaling. All three gingerols inhibited DNA synthesis by T lymphocytes, as well as interferon-γ synthesis. In contrast, only [8]-gingerol and [10]-gingerol inhibited CD25 and CD69 expression, and IL-2 synthesis. None of the gingerols affected IL-4 synthesis. Exogenous IL-2 enhanced T lymphocyte proliferation in the presence of [6]-gingerol but did not significantly increase T lymphocyte proliferation in the presence of [8]-gingerol or [10]-gingerol. In line with this finding, [8]-gingerol and [10]-gingerol impaired IL-2-induced proliferation of CTLL-2 cells, but constitutive CD25 expression was unaffected, indicating inhibition of IL-2 receptor signaling. In general, [10]-gingerol and [8]-gingerol were more potent inhibitors of T lymphocytes than [6]-gingerol. Suppression of T lymphocyte responses by gingerols suggests that these phytochemicals may be beneficial in chronic inflammatory conditions associated with excessive or inappropriate T lymphocyte activation. Copyright © 2015 John Wiley & Sons, Ltd.
 

Gingergrrl

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yes Ginger it has anti-viral, anti-bacterial properties, immunomodulator and more! I wonder if ME/CFS patients have done extensive trials with it? Did you do?
I have not done any trials with ginger and was being silly b/c it is my dog's name and she is therapeutic. But (anecdotally) ginger has helped me with everything from nausea to headaches and I have ginger tea, ginger ale, ginger candies, ginger gum, and all forms of ginger at home at all times.
 

Frenchguy

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Hello @Frenchguy ,

I was thinking of you, did you benefit from your week in hospital?

i hope your doctors find a cause to your problems and a way to solve it.

If not , I would suggest you to give me your extra CD8 (I'm too low!):)
Hi everyone,

Sorry for my late response. I was hospitalized a month ago during 4 days.

The hospitalization was a nightmare. I saw two psychiatrist and two psychologists...

A neuro told me I have a functional disorder and If i want immune modulating treatment, I have to go abroad.
My internist doctor who is convinced I have ME is blocked. He prescribed photopheresis treatment and contacted two centers to perform the procedure. The first center who use a dissociated system was okay, but the hospital refused (because the cost of the procedure is charged to the hospital).
He contacted an other center who perform the procedure with à therakos system and they refused because it costly and off label.

My family proposed to pay the treatment but it's refused.
My doc put me on azathioprine 150 mg/day and propanol for POTS the time we find an other solution... We contacted the president of the French Scientific comitee of CFS, I say I have no proof this treatment will work and it's costly..

My condition deteriore to the point I am bedridden most of the time.

Sad France
 

pattismith

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Hi everyone,

Sorry for my late response. I was hospitalized a month ago during 4 days.

The hospitalization was a nightmare. I saw two psychiatrist and two psychologists...

A neuro told me I have a functional disorder and If i want immune modulating treatment, I have to go abroad.
My internist doctor who is convinced I have ME is blocked. He prescribed photopheresis treatment and contacted two centers to perform the procedure. The first center who use a dissociated system was okay, but the hospital refused (because the cost of the procedure is charged to the hospital).
He contacted an other center who perform the procedure with à therakos system and they refused because it costly and off label.

My family proposed to pay the treatment but it's refused.
My doc put me on azathioprine 150 mg/day and propanol for POTS the time we find an other solution... We contacted the president of the French Scientific comitee of CFS, I say I have no proof this treatment will work and it's costly..

My condition deteriore to the point I am bedridden most of the time.

Sad France
David, I'm sorry you have to deal with all these difficulties, if you wish to try photopheresis, maybe you will have more chance in Switzerland?

https://www.hug-ge.ch/dermatologie-venereologie/photopherese


;;;;;;
 

Frenchguy

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Thanks for the link @pattismith

I looked studies about photopheresis cost and it's HIGH (4000 francs suisses / traitement LOL).

I will have the response soon to a Moroccan private clinic who perform this treatment.
If it is ok, I will fly to Morroco ...

We have the same equipment at 50 kilometers of my home, but no.
Did you know Jean Dominique de Korwin Patti ?
 

pattismith

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Thanks for the link @pattismith

I looked studies about photopheresis cost and it's HIGH (4000 francs suisses / traitement LOL).

I will have the response soon to a Moroccan private clinic who perform this treatment.
If it is ok, I will fly to Morroco ...

We have the same equipment at 50 kilometers of my home, but no.
Did you know Jean Dominique de Korwin Patti ?
No I don't know him, he is a CFS specialist?
 

Frenchguy

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Location
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This man représente the main problem of ME recognition in France.
They don't take the disease seriously and recommend to physician to don't do extensive tests for people because it is costly.

When I see the complexity of our disease and the number of differential diagnosis, I think ils se foutent de notre gueule
 

pattismith

Senior Member
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This man représente the main problem of ME recognition in France.
They don't take the disease seriously and recommend to physician to don't do extensive tests for people because it is costly.

When I see the complexity of our disease and the number of differential diagnosis, I think ils se foutent de notre gueule
unfortunately it's the same in most countries, and only a few serious CFS/ME specialists are doing a great job worldwide.
I was not expecting France to be at the top in this field, so I'm not surprised by your experience, it is very sad.

Hopefully your doc trusts you and is willing to help, it means you have been a good advocate for your case,
your efforts will pay, I'm sure
 

Research 1st

Severe ME, POTS & MCAS.
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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
That's a very interesting result, thank you for sharing.

May I ask please, could you possibly tell us if your scan was called an FDG-PET scan? In ME CFS it can find reduced glucose metabolism in the brain and I wondered if this was the scan you had? It appears not to be one, but I don't want to jump to conclusions.

CFS study below using FDG-PET
Source: https://www.ncbi.nlm.nih.gov/pubmed/12810781

If I remember correctly FDG PET looks at low metabolism of neurons, but other types of PET look at blood flow using a different radioligand/tracer, e.g. not FDG.

Positron emission tomography (PET) with 2-[fluorine-18]fluoro-2-deoxy-D-glucose (FDG) is a highly useful imaging modality for the diagnosis of neurodegenerative disorders (1–6). FDG is an analog of glucose, the main energy substrate of the brain. After uptake and phosphorylation by hexokinase, FDG becomes trapped in neurons, allowing imaging and measurement of the cerebral metabolic rate for glucose. This is closely related to neuronal and synaptic function in numerous human resting and functional activation studies (1–3). Characteristic patterns of altered metabolism seen at FDG PET can markedly improve the clinical diagnosis for specific types of dementia such as FTD, Alzheimer disease, and DLB, each of which has characteristic metabolic signatures, although there is some overlap. An essentially normal or preserved cerebral uptake pattern can also help distinguish reversible pseudodementia due to depression from a primary neurodegenerative syndrome (12,13). Recognition of the common patterns of altered cortical metabolism seen in these various entities is crucial for identifying the cause of cognitive impairment. With use of proper technique, and with the increasing availability of computer-assisted diagnostic (CAD) statistical mapping tools, the neuroimager can play a key role in the workup of patients with cognitive impairment.
Source: https://pubs.rsna.org/doi/full/10.1148/rg.343135065

Your scan photos, I wondered if these were another type of PET scan perhaps, and not what is described above in the text box? Thank you.