Discussions By Condition: Medical Stories

Tubular Aggregate Myopathy (TAM)

Posted In: Medical Stories 0 Replies
  • Posted By: Anonymous
  • July 14, 2013
  • 11:48 PM

I was diagnosed in the year 2000/2001 with this rare disease . I had taken a statin Tricor, after a time I was experiencing fatigue, and was very achy, finally someone noticed my CPK level was pretty high, and I had not exercised or ran, which I understand raises CPK levels, so after about 8 months on Tricor, I was told to stop. I had a biopsy done, taken from my thigh muscle, and all sorts of microscopic tests, eventually they diagnosed TAM. They really knew very little about the disease. I have seen a neuromuscular doc at the University of Michigan, Ann Arbor, MI. Again, they just said it is like "gunk" building up in the muscle. There is no known treatment I was told for this disease. I am wondering if there is anyone that has any new information or help with this malady. Thank you so very much. Jim V.

Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.