Solve webinar today, Thurs May 19: Dr Jarred Younger, "CFS & ME: Can we find answers in the brain?"

[Hutan]

@JaimeS and @viggster
That's really interesting about the punctate lesions observed in the early stages of your illnesses, with viggster's later disappearing.

For most of us, I expect early in our illnesses we were just at the point of trying to convince our GP to investigate further. Where I lived, even after the GP wrote the referral letter, it took months to get to see a specialist who could order the MRI.

I wonder if there is a pattern of punctate lesions that later heal in ME but that it is being missed because the MRIs typically aren't being done early enough or being repeated. I too had aphasia in the first year, but it is only a problem now if I am very fatigued.

@JaimeS, you haven't thought about having another scan?

 

[Kati]

@JaimeS and @viggster
That's really interesting about the punctate lesions observed in the early stages of your illnesses, with viggster's later disappearing.

For most of us, I expect early in our illnesses we were just at the point of trying to convince our GP to investigate further. Where I lived, even after the GP wrote the referral letter, it took months to get to see a specialist who could order the MRI.

I wonder if there is a pattern of punctate lesions that later heal in ME but that it is being missed because the MRIs typically aren't being done early enough or being repeated. I too had aphasia in the first year, but it is only a problem now if I am very fatigued.

@JaimeS, you haven't thought about having another scan?

I'm 7.5 years into my illness and still trying to convince my GP... I don't know what it will take...

 

[Sushi]

I'm 7.5 years into my illness and still trying to convince my GP... I don't know what it will take...

Not to be too grim, (and with only best wishes for you) from other reports, a death certificate might work.

 

[JaimeS]

@JaimeS, you haven't thought about having another scan?

Just finally digging myself out of the financial hole in which ME/CFS buried me. Back then I was intent on proving something was wrong. After Mayo visit, was not questioned again by docs except casually (you're getting a Z-type scan? For what? CFS? I don't think that --" "good for you, do the scan now kthanksbye.")

Take-away: at this point, I wouldn't get a scan that wouldn't help me make treatment decisions.