I would love to talk about this , as I have been also diagnosed with this , we need info on test or some way to get rid of this disease! I've been searching for answers and no info out there as it is so rare , but I want answers if any one has them!
Loading...
I received my diagnoses with NAM in late 2015 after various testing and referrals that started in June of 2015. I had been taking simvastatin for 6 months. I could not get up, roll over or pick up anything from the floor. I could not life my feet or climb stairs, etc. They suspended statin use and it did not help. I took 60 mg prednisone daily with no improvement. I had to have the muscle biopsy, HMGCR test and nerve induction test to get diagnosed. In March of 2016 my insurance finally approved using Rituximab (chemo) and I received 2 doses, 1 month apart with single doses every 6 months thereafter. I have regained strength. My CPK levels are still around 500. Hopefully this will calm it down and eventually get my CPK level to normal. I also take a generic for Cell Cept (1500 mg 2x daily) and the prednisone is now at 5 mg per day. Vitamin D helps also. I can tell when I am nearing 6 months since treatment as I get weaker and muscles are sorer than normal. I am a 52 y/o female with type 1 diabetes since age of 8, no malignancies, heart attacks or (illegal) drug use.
Loading...
Hi wife. Is stopping all milk products. Plus grain taking a lot of vitamins. And fruit. Allergic to azathioprine. And methotrexate. Has c667t gene plus a diabetic
Loading...
This has just come up as a diagnosis(NAM) for me. Mine was most likely caused by statin drugs, which I stopped taking back in December, when they were first treating me for Rhabdo. (my CPK levels were at 20,000) I have had some improvement and hope to be started on steroids soon. Am working with at least 4 different doctors.
Loading...
I was giagnosed with NAM yesterday and am interested to know about the success of any treatment and any improvement.
Loading...