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Member puggriffey & Mayo Clinic discussion

Postby misterjuanperalta on August 31st, 2015, 7:51 pm

Bringing back an older post (edited for readability)...

At my Mayo Clinic visit, we discussed MND at length and the highlights are discussed here. MND is not vague, and does NOT present in an ambiguous way. Why, then, is it so "hard to diagnose" sometimes? Because the process of ruling out other more treatable conditions with close, if not identical overlaps in symptoms and features takes significant time. It ultimately becomes a diagnosis of exclusion, and by this time, the disease advances to a point where it is unmistakeable. Twitching for months without weakness is a relaible pattern that points strongly to a benign condition.... The neurologist confirmed markedly that plenty has been done at Mayo and other places that confirms that this condition (BFS) does NOT progress to disability and/or neuromuscular disease, and that the course is benign. He confirmed that for every published Mayo study, there is underlying, constant information sharing that is not publicly published that builds a strong basis for these conclusions. It would be "medically unacceptable", he said, to base a benign condition of this nature on anything less than years of compiled research, data and anecdotal information from hundreds upon hundreds of patients.

Source (Epilogues): search.php?st=0&sk=t&sd=d&sr=posts&keywords=mayo&author_id=648&start=30
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