MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
I carry several dx, SLE, Sjogrens, Ocular Myasthenia Gravis, Autoimmune Hepatitis, possible MS and the latest is MCTD. My question is I have a neurogenic bladder and bowel. I have been through many tests, and I have been self cathing for over 4 years because i retain urine. The last few months have confirmed that I have decreased to almost no motility in the bowel, and it is also neurogenic. It is needless to say life altering, I have to put aside 1 hour daily for a regimen I never dreamed i would be doing at the age of 40 with young children.
The frustrating part is all my team of doctors do not know why this irreverible damage has been done, other than I have an autoimmune disease of unknown name that targets my auto tomic nervous system and that is why I have the neurogenic bowel and bladder. they progressed over the last several years to where I am now which is as my doctor said the bowel of a parapalegic. Do others with MCTD have these issues with the bowel?
It seems to be the one outstanding mystery in my case, but my team of doctors want to put me through a round of 6-8 weeks of high dose chemo, the real deal, not the stuff i am taking now orally. It scares me, but they do not want any more irreversible damage done.
thanks for listening,
God Bless!
The frustrating part is all my team of doctors do not know why this irreverible damage has been done, other than I have an autoimmune disease of unknown name that targets my auto tomic nervous system and that is why I have the neurogenic bowel and bladder. they progressed over the last several years to where I am now which is as my doctor said the bowel of a parapalegic. Do others with MCTD have these issues with the bowel?
It seems to be the one outstanding mystery in my case, but my team of doctors want to put me through a round of 6-8 weeks of high dose chemo, the real deal, not the stuff i am taking now orally. It scares me, but they do not want any more irreversible damage done.
thanks for listening,
God Bless!
As for bowel, always constipated. I blamed it on the Plaq, because that is when it started. But now, I am off of the Plaq with no change. So, who knows! I eat a lot of fiber, but still....
I know, reflux is a MCTD problem, but bladder and bowel are also smooth muscle, so maybe that is the problem.
Mary Ann
hugs,
paige