hi been living with this pain in the A** for my whole life had symptoms for ever with no doctor being able to figure out whats wrong and from me not wanting to admit what was wrong out of fear I guess of knowing what was wrong myself. however I was able to get diagnosed a couple years ago and was placed on many different meds. first was diamoxx but the side effects of bad and distasteful foods i was able to get my doctor to try me on mexiletene it has been great except for some kidney area pain was just wondering if anyone else has experienced this pain also.

Type of Myotonia: not sure

Country: usa

I don't remember anyone mentioning kidney/flank pain from Mexitil. You might want to try taking it with an antacid like Tagamet to see if it helps. NSAIDS can cause kidney pain. I would ask to be monitored to be sure your kidney function is good and that you're not developing any stones.

About 2% of people who take Diamox develop kidney stones, but hopefully you didn't take it long enough for that to be a problem. Diamox does make certain foods and drinks taste awful. They prescribe it a lot up here in the mountains for skiers who get symptoms of high altitude sickness, and they say it really messes with you when you drink anything carbonated like Coke.

Jan

Type of Myotonia: Thomsen's

Country: US

yea the coke taste was the main reason I wanted off diamoxx. my doc does and has tested for the kidney and said everything is fine. not sure I trust him though after all he is a doctor. never had the pain until I started taking mexiletene I originally started mex while on diamoxx as order of doctor but the pain in the area was almost instant and after investigating myself I found that a person should never take both. in my area of the kuntry the docs and pharmacist are smarter then ur average fifth grader. it took over 26 years for me to even be diagnosed with mytonia still until I found your site did I learn of the dna test to find which one I have on my next visit I plan to seek the test to find out exactly what I have not sure but I know my joints are completely gone. the pain,popping and krackin are constant and according to my doc there is no pain with this disease so I do not qualify for pain treatment help.

Country: usa