Neuroinflammation in Patients with CFS/ME: PET study

[Aerose91]

I am really sorry to hear that. But with tegard to PEM etc. And you functional capacity to move around are those greatly affected? Thanks for sharing your reaults with us.

I definitely have serious PEM and POTS but most of my issues are neurological and brain related rather than physical. Fatigue isnt my most prominant symptom

 

[MastBCrazy]

Where do you get these test done in Canada it seems impossible.even though we have the CCC criteria to say to use them.

Hi @Justin30 , I'm in Toronto and my neurologist ordered it. I get my scan at Mt Sinai in their nuclear imaging department. If issues of questionable interpretation come up, Dr Hyde up in Ottawa and Dr Freeman are two suggestions that were given to me.

 

[Joel1970]

I argue with my Neuro that I have inflamation and he said that is imposible (I feel it in brain and spine too). And I could prove it because after I just saw him (was not able to sleep at all even on sleep meds for 2 weeks) the citokine profile inflamatory citokines were throguh the roof. I also get bumps in my head like I fell or got hit by a bat. Arggggg This is so important I hope we could help fund more of this work.

Hey I get that too but have never heard it associated with CFS/ME. Have you ever had an MRI of the brain to see if there is anything unusual? I was thinking out asking for one. The bumps on my head I mean.

 

[Living Dead]

Hey I get that too but have never heard it associated with CFS/ME. Have you ever had an MRI of the brain to see if there is anything unusual? I was thinking out asking for one. The bumps on my head I mean.

As i wrote on the previous page, bumps on the head are associated with lupus.

 

[Seven7]

Hey I get that too but have never heard it associated with CFS/ME. Have you ever had an MRI of the brain to see if there is anything unusual? I was thinking out asking for one. The bumps on my head I mean.

I have small white liseons, other than that nothing unusual. I have noticed it happens if I over hydrate so is not as bad so much. Sometimes it is out of the blue so not much I can do about it. I think that it is hyper perfusion. I did get the spinal tap and was normal but is what it feels like. I get like spills that feel the same acid like from the gut.