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...
So, I kind of retired. I am only working as needed which has been about 2-3 days a month for the past few months.
I am doing things I needed to do for awhile. Talking to a financial planner. Finding a lawyer to write a will, living will, and medical power of attorney. Getting my daughter on disability.
I have been having belly pain for awhile now and nothing has been found. The ultrasound found nothing, the Tech Hida scan was normal. The colonoscopy showed a large adenoma (a pre cancerous growth) which was removed. The pain continues, so, I need to see the Dr again.
I feel like I am back to where I was when I was first diagnosed. Again, I know something is wrong, but the Drs cant find it. So frustrating! They all think I am doing so well.
So, I am making my plans for what they will evenually find. I hope it is not serious, but who knows. As least now, my kids are adults and most are into their own lives. That was not the case 7 years ago.
Thought I was over this doubt and anxiety. Guess not.
Mary Ann
I am doing things I needed to do for awhile. Talking to a financial planner. Finding a lawyer to write a will, living will, and medical power of attorney. Getting my daughter on disability.
I have been having belly pain for awhile now and nothing has been found. The ultrasound found nothing, the Tech Hida scan was normal. The colonoscopy showed a large adenoma (a pre cancerous growth) which was removed. The pain continues, so, I need to see the Dr again.
I feel like I am back to where I was when I was first diagnosed. Again, I know something is wrong, but the Drs cant find it. So frustrating! They all think I am doing so well.
So, I am making my plans for what they will evenually find. I hope it is not serious, but who knows. As least now, my kids are adults and most are into their own lives. That was not the case 7 years ago.
Thought I was over this doubt and anxiety. Guess not.
Mary Ann
I don't have to tell you anything, you know the drill, any passing blood, run don't walk, hit 911, call in an airstrike, run into the street screaming, whatever works to get you to the ER stat.
Odd coinkydink, I just asked for a new beneficiary form from my doctor... lawyer... bookie... uh, financial advisor (damn brain fog!) today. Good to be making those plans...
But hope the anxiety isn't getting too high. We don't know what the pain is (duh! that's what's causing the anxiety) and it doesn't mean you got cancer. Hang in there, keep us posted, sending positive thoughts your way...
--Cat
You have been my (unknowing to you) voice of reason with medical knowledge and understanding. I have read this post so many times that I have hypothetically written you a variety of themed based responses. Yet I feared to because I realized you already knew anything I could possibly say to logically reassure you. But then I realized after all the great information you have passed to those of us who needed it, you didn't need an explanation of probability or a different point of view on your data. You needed a shoulder to rest your head, to be able to sigh and breath out all the strength for a minute and have someone reach around your shoulder without words and just be there, like you have always tried to be. We are all here. At different points of understanding yet we are here.
I did want to tell you this, knowing there may be a possibility of Quoting you from some time in the past. Some of the group being pain and symptom free all the way to some with severe damage and suffering all struggled through the lack of Dx to the preliminary fear we all had of the knowing yet understanding the lack of understanding the possible impact. We made choices. Scary choices to help improve our lives. And you have an incredible understanding of that and were far better at coping than some of us. No matter what happens from pains from anxiety and lack of time for the body to have totally repaired your operation to the possibility of a cancer. You know what to do, you know the stages of understanding and know how to make the right choices again to help improve your life. No matter what happens, when its time you will once again understand what needs to be done and then share what you know to help others again. You are a super trooper and will get through this rough patch.
Robert
Well , I have had the pain for months. It is gradually getting worse but slowly and I havent had to take anything for it.
I had the colonoscopy last week. Just got the biopsy report back that showed the adenoma.
No blood.
But I just needed a hand to hold and a shoulder to lean on. If I tell to=he spouse how I am feeling he will just go into a depressive tail spin which doesnt help me at all.
Thanks for listening.
Mary Ann
-Kate
I know you will look after yourself and do what is best for you, please keep us informed.....I will keep you in my thoughts that this too will pass. I have always admired how you handle this chronic illness we share.
I have said to my hubby we need to update our wills and such, it just makes sense and I feel it will take some stress away.
Take care of yourself.
Peace love and joy to you
Beth
I went to the rheumy today and she ordered liver and kidney function studies as well as a CBC and muscle enzymes. We will see what those show. My next step is to go back to the family doc and ask for a CT or MRI of the abdomen or an endoscopy of the esophagus and stomach.
Kate- I think you are right in that it is bringing back the feelings I had when I knew I had this autoimmune disorder and was ignored or made to feel I was exaggerating. The symptoms of MCTD started when I was 2 years old with my diagnosis coming at age 53! I did have a couple of Drs try to help me but they didnt know what to treat. Still, that is a long time.
I am tired of this.
Mary Ann
Congratulations on your retirement and for getting all your affairs in order for your family. It takes time but once you're done you'll rest easier.
I hope that your GI problems resolve and that nothing (additional) is wrong! Although as other people have said, there can be "nothing wrong," according to the drs., and you can still be in pain and miserable. Wishing you some moments of peace and calm as you tackle this latest health issue.
Incidentally, my name is AnnMarie, I'm also 53, and my daughter's on disability! Best of luck getting your daughter on disability.
AnnMarie
So glad to have this group.
Terrilynne
Romans 12:12
The rheumy told me to take sucrafate before bed and see if the abdominal pain goes away or lessens. We will see.
Mary Ann
I can literally feel your pain-- I'm also dealing with abdominal pain.
I'm not a stranger to abdominal pain and nausea. I have gastroparesis and gastritis. But, this pain I'm having now is constant and nothing his helping. Thankfully my GI doc is taking this seriously. Did bloodwork, endoscopy and on Friday an abdominal CT with contrast. She said with MCTD so many things are possible. The pain is pretty classic for pancreatitis but my enzymes aren't elevated, so I am pretty much a diagnostic dilemma also. I was very apprehensive about risking the radiation exposure and the dangers of IV contrast but I am sick of hurting, the nausea and I'm losing weight. I decided to risk it on the off chance they can find something fixable.
I'm so sorry, for you and I empathize with what you are going through. Have you seen a GI doc yet? Are your doc's going all out to hep you. I hope they are and that they can find a solution. I know the unknown is so scary but you are strong and have been through this before, I pray that you will find the strength to deal with it now. I will pray for strength and peace for you and for wisdom for your doctors. Thank you for all the help you've given me and everyone else on here. Lifting you up now!!
Mary Ann