Forum

Un diagnosed.

How do you know when to contact the neuro? I have been unwell for 14 yrs and was told i had m.e/cfs but i had another brain scan last year that revealed some lesions. I had a LP and evoke potential test which were both normal. The neuro said there was nothing he could do at this present time and he would see me in 12 months time but if anything significant happened before then to ring and he would see me sooner.

So i still don’t know what i have because he said the brain scan didn’t collaborate with how i am as in he expected me to be worse. I haven’t felt well the last few weeks i.e back/hip/neck ache and fatigue. Do i just ride it out or do i see the neuro??

Also the immunologist i saw said people with m.e/cfs can have abnormal brain scans so i am confused.

If these are new symptoms, you should get them logged/witnessed by the neuro so they go on your record.

I would go to GP and ask to be re-referred to the neuro - that’s what I did when I was in limbo and had new symptoms. Because my neuro was able to witness the new symptoms, he sent me for another MRI which led to my diagnosis.

HTH

PG xx