Dr. Agar, I write on behalf of Brian Riddle who suffers from EPS. He has been bedridden for the better part of 9 months due to 7 abdominal surgeries and removal of portion of his small bowel. He has an active fistula which has not sealed and cannot be surgically repaired.
Since coming home in Dec. he has had no resolution to muscle pain and fatigue. He has had PT and OT and will now continue that as an out patient. His albumin and protein are now in the low normal range and he is on an elemental diet. Is it too soon to expect that his muscles issues would have resolved by now? He was on TPN for months and severely malnourished prior to that. He lost nearly 29 pounds on his already slight body.
Is there reason for concern that something else may be going on? No one seems concerned at this point.
Barbara Riddle
Dear Barbara
I wish I were able to help here, but I am afraid that his situation sounds far too complex for me to be able to have any chance of helping - especially through the impersonal medium of the Internet. While I sympathise with you, I am afraid this is one situation where I am unable to wisely help, and all I can suggest is that you place your concerns before his attending team(s) for their advice.
That said, there are a couple of question I would ask of them:
(1) be sure that if he is taking a statin, a trial off this agent might be worth considering as these agents can cause muscle symptoms
(2) that they have considered, after such a long illness, the possibility of Addison’s disease = a state of low adrenal gland function.
Beyond those two rather simple guesses, such a myriad of other possible factors could be at play here that It would be meddlesome and inappropriate for me to start probing in the dark. To be honest, I would counsel you to turn to those who know his case well for answers, and not to the Internet.
John Agar:
Sent from Atlanta on my iPad