IT took me three months on the computer to find my diagnosis,, I had a new relationship with a new doctor and I so hoped she would be open to what i had found and done,, The disease that matched me the most was a syndrome called Andersen Tawil Syndrome.. a very rare ion channelopathy causing delay in repolarisation of muscle cells.. Not only did this fit I also look like other persons with the condition.. Best known treatment high potassium low sodium low carb diet and potassiu supplementation,,
could it really be that simple? Two days on the diet I woke up feeling very strange.. I had no pain?? Twenty five years of psychiatrict and garbage can diagnosis and I woke up pain free..
I was sure i was going to be laughed at by my doctor.. I cobbled together a family time line of early deaths strange illnesses and even photographs of family members along with half a dozen research papers on this rare condition..
I truly expected to be laughed at,, she didnt laugh she looked checked my history and my myriad of complaints on my check list
went to the computer researche some more came back looked at me top to bottom and said I agree...Life has been so much better since this has happened..
please take an active part do your own research and be respectfull but firm in your approach if you have a good relationship with your doctor they will listen,, kcb
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