BFS Status Update!

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BFS Status Update!

Postby misterjuanperalta on November 25th, 2018, 10:38 pm

Today, I wanted to share my journey and efforts to unveil the underlying causes of my symptoms and improve my "health". That's right; you have to do the legwork your doctor has no time to do during or after consultation. To date, my neurologist is the only doctor I consult with who has helped me uncover the following diseases: Celiac Disease and Episodic Cerebellar Ataxia w/ Myokymia, secondary to GAMT deficiency.

These conditions were discovered after the Mayo Clinic's initial diagnosis of Benign Fasciculation Syndrome, about which I discuss in the booklet I made available here at no charge. How did I uncover the diseases? Well, I began to research every single disease I could find that could be causing my symptoms and/or the mysterious syndrome. I also researched my family history. Then, I identified blood tests and other procedures I could request to (help) diagnose each of them. With supporting documentation on hand, my neurologist ordered the tests because they were connected to or associated with neurology, symptoms and family history.

Once the diagnoses were made, I had to figure out how to heal my body without medications. At first, he prescribed several, which I told him I would consider after all other efforts failed first. Later, at last consultation, he could have prescribed a fitting and appropriate anti-seizure medication discussed in the research I presented to him, and he decided it wasn't needed. Finally, I asked him to change the Mayo Clinic's diagnosis if he agreed with my self-diagnosis. First, I explained to him: "Doc, as you know, I'm not a doctor. But based on the laboratory results and research I've presented to you, I think the diagnosis is accurate. Further, to disagree with my self-diagnosis, any doctor would have to disprove my findings". His answer was, "I think you have diagnosed yourself correctly, as a good doctor would. I agree with your findings and will be signing off the new diagnosis today”.

At that point, the consultation ended and we parted ways. I went home with some additional blood tests and the signed documents. Mission accomplished, although the journey continues.

Update: Treatment success is likely reliant on successful improvement of MTHFR function, reduced in my case.
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