Passing along Ampyra information for MSers and a caution reminder for all.

[tpsbmam]

I have both MS and chronic renal failure, stage 3/4 (advanced). I saw my neurologist's PA the last time I visited. Mind you, this practice treats me for free and have for the last 3+ years. When stable, I go every six months and see he neurologist every other visit.

So anyway, I saw the PA who evaluated my walking and then suggested I try Ampyra, the new med that is supposed to help MS walking. I have to get incredibly expensive meds (this is one) free through the company foundations. So she prescribed, I jumped through all the hoops and received my first Ampyra via FedEx on Thursday. I read the information sent about Ampyra and noted cautions about taking it if you have kidney disease. That's pretty standard with lots of meds. This one felt different -- among other things, one of the possible side effects is kidney and/or bladder infection. :wtf:

So I erred on the side of caution and called my fabulous nephrologist (who also sees me for free). The nurse who took the message was nonchalant and clearly used to these warnings being nothing. The call came from the nephrologist's office the next morning: A very firm YOU CANNOT TAKE AMPYRA. IT CAN CAUSE SEIZURES IN PEOPLE WITH KIDNEY DISEASE. This is the first time he's nixed a medication.

So, for people with MS and kidney disease, there is the warning.

And for everyone, check and double-check your physicians! This mistake happened to have been made by a PA and not an MD. Doesn't matter IMO. I could give you a horror story about the head of a neurology department prescribing something that could have killed me despite having my typed list containing all my prescribed & OTC meds, vitamins, drug allergies, vaccine information, etc. I'm very thorough in the information I provide docs and they still make mistakes that indicated they didn't bother to check my one or two pages of information.