Using PET scans to measure brain metabolism damage

This study shows a possible new method to identify physiological changes in cognitive function. People who have undergone chemo suffer from similar cognitive problems to us. Using PET scans, researchers have been able to identify reduced glucose metabolism in areas of the brain. This methodology may be able to be applied to PFS patients to identify (and perhaps down the road speed up a treatment plan) areas of brain damage which cause PFS cognitive problems.

(Quoted from the article below. This is very similar to PFS brain fog). … brain.html

Abstract: … rintmode=1

This is very disappointing. If this is true for us (my guts feeling is, it is very possible ) then what is the soluion?Especially when I have seen the similar damage caused by Accutane as well. I don’t think there is any treatment for brain damage. One of my office worker has gone through Chemo recently and he has exactly the same symptoms like us mainly cognitive impairment, low body premature, cold hands and feet (doctor told him not to open fridge),indigestion,pins and needles, twitching etc.

Very interesting.

Spstriken. If we can get diagnosis, for example, PET scans showing altered brain function, tests showing low neurosteroid levels etc., we can then be enrolled in clinical trials for things such as neural stem cells or allopregnanolone trials for MS. We do not have to be diagnosed with MS (or ALS, or whatever) but if we have very similar symptoms, we are eligible to become enrolled in studies. For example, if we have tests showing low allopregnanolone, we could possibly enroll in that MS allopreg pill clinical trial. I know this because my family and I have spent months looking into this. This most difficult part for us is getting the diagnosis though because from what I know, no one has gone to a doctor here in the US and gotten a PET scan and tests showing all these abnormalities. So far all we have are abnormal blood tests.


I forgot to mention, here is a study where mice treated with radiation (not chemo, but similar and possibly worse than chemo) were treated with neural stem cells for brain damage. … ain-cells/

have either of you improved at all? I have been off for 7 months and had no improvements until about a month ago. Brain Fog diappeared, sexual function is much better (better erections, night time/morning erections), orgasm feels better, cold intolerance is starting to fade (I can actually go out in 38 degree weather and I am not shivering, this summer I was shivering in 80 degree weather) etc.

Thats why I dont feel like its brain damage, but rather impeded function. Early on, I would go from one day ok, to complete zombie the next, then back again.

If many of us could get PET scans, we would have more proof of damage or a way for doctors to diagnose (i.e. brain damage or altered brain function). The more objective tests we have showing something wrong, the better.

I’m surprised Dr. Alan Jacobs didn’t order a PET/CT scan for anyone. It’d be great if someone in the New York area contacted him about it. If they could show him the PET/CT Accutane and Chemobrain studies, maybe he’d be more interested.

It seems like we could piggyback their study too, they already have a control group so all we would need is PFS patient scans to compare them to. I didn’t make the connection at first, but the brain scan image posted also correlates to the left brain numbness/headache.

I think it would be great for everyone here to go to doctors and see if they can get a PET scan. If you complain of mental side effects, they should eventually prescribe PET scan, although they will likely first check with MRI. If doctors like Dr. Alan Jacobs could help with ordering PET scans for his PFS patients that’d be great. But if we had objective evidence like this, it would seriously speed up recognition of the disorder and possibly get more doctors involved in research, treatments, etc.

MRIs will not show anything because they look for physical damages to the brain, i.e. smaller hippocampus, etc. PET scan will show altered glucose metabolism, dopamine level/function, serotonin levels function, etc. I really think its crucial we start getting these tests done. Why was it so easy for doctors to give us Clomid or HcG? Clomid is serious stuff (one doctor I saw described it as a “nuclear bomb”) and they wouldn’t just give it to anyone. But, we have blood tests showing abnormal hormone levels so doctors are justified in prescribing it. If we have other objective tests showing damage, doctors are more likely to try treatments, be it progesterone, allopregnenalone, sending us for neural stem cell clinical trial, etc.


Yes we could possibly piggy back their studies. If we show that we have altered brain function caused by a chemical, that is similar enough for doctors to include us in clinical trials and research. We could possibly have chemobrain, albeit another form (although some may argue finasteride could be considered a chemotherapy against prostate cancer).

I’m in the process of trying to get a PET scan, but I need to undergo a few other tests before such as EEG. Anyone else trying to get a pet scan? I think this would be interesting to look at.

Surely PET scans should be part of The Foundation research; most of us have mashed potato brains. I am expecting to have one. Will let you know when the results are in.

Another 5ar inhibitor…Accutane…

[i][b]Effects on Regional Brain Metabolism in a Representative Patient Receiving Isotretinoin Treatment for Acnea

aThere was a visible decrease in metabolism in the orbitofrontal cortex following isotretinoin administration in this patient. This patient suffered from headache, was noted by her family and clinician to have disturbed behavior, and dropped out of school. She did not, however, have a clinically significant increase in depression as measured by the Hamilton depression scale.[/b][/i]

I have met three people in real life recently, all three (two males and one female) are just like us, struggling on TRT, HRT. They have same fatigue, joint pain, appetite issue, headache, loss of libido etc and many other hormonal issues including thyroid. All these people have got into this mess after head injury. Two got head injury in accidents and one while playing basket ball. I think all of us should get PET scan to rule out brain damage.

so I have a question,does brain fog include all of brain damage?