I’ve been dealing with brain fog and chronic burning headaches for the past two years since getting PFS after one pill. I’ve gone to my primary doctor, neurologists, endocrinologist and have gotten no luck. I’ve taken several blood test, got an MRI, and still no diagnosis. All the doctors tell me that everything is normal and that I’m just “stressed”, or “it’s all in your head”, so the only thing they would prescribe me is ibuprofen. I tried exercise and have taken many supplements which have done nothing, nor has just sitting around. What should be my next move?
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Hey omahre,
Good to see you checking back in with us again!
Your story reflects many other patients’ experience who also have gone from doctor to doctor and leaving with empty hands. Same with me, also got an MRI done of my brain, all kinds of blood tests, no results. I was eventually told that I was depressed based on my previous medical record and they basically said it was all between my ears.
Right now, PFS has no established etiology and is simply not known and misunderstood by doctors. I don’t think we’ll be getting adequate help before we figure this condition out and put it on the map.
Luckily, we have been able to fund a new study together recently, and the PFS Network is ongoingly accepting donations to fund follow-up research. So if you are willing, you could help out by donating or by saving up for when the time comes and new research efforts are announced.
What I want to ask of you is to take a moment to make a new thread in the Member Story section and fill in the template it gives you. It would be great to know your story and symptoms in more detail. It would be greatly appreciated! When you’re done with that, you can help out with data collection by filling in the patient survey by clicking the icon next to the globe in the top right.
It is also very important that you report your side effects to your country’s regulatory agencies, if you haven’t done so yet.
I wish I could give you a verified first-line treatment option or something like that but we simply don’t have it. For now, all of the above will greatly help us all with getting this condition recognized.
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