Hi Red. Welcome to the forum. I wish you didn't have to be here. I wish none of us had to be here! You have so much going on. Please don't ever apologize for giving your detailed history. It helps us to help you! Plus, this is why we're here. To support you and give you some hope.
Your post has a lot of detail in it which is great. Have you been keeping a diary or journal of all your symptoms, etc? After a while you start to forget stuff. A diary is a great tool. But it sounds like you have all your info well documented! Do you have at least 4 of the 11 criteria needed for a diagnosis? www.lupus.org, will have the criteria for you to check out. If you have copies of your blood work, let us know what the tests were.
Yes, you can definitely have that flu feeling without the vomitting, etc. It's a classic Lupus symptom. So is a low grade constant fever. Joint pain, swelling, aches and pains, dizziness, depression, protein and blood in your urine, etc. You've described all of the Lupus symptoms. (there are more, unfortunately). That chest pain you have. Does it get worse when you lay down? Is it a sharp, stabbing pain? If so, it's probably Pleurisy. Inflammation of the lining of the lungs. I had it bad. That's what got me into the hospital, and a diagnosis 5 days later.
"Just in your head." I can't tell you how that angers me. I was told that as well. In fact, the doctor yelled at me and accused me of trying to get some strange attention. I wanted to kick him in the nards. When you get that kind of treatment, you need to move on. And for the PA you had to talk to, they're not worth your time either. It's not uncommon to go through 3 or 4 different rheumatologists until you find one that truly takes you seriously. I think one of the misfortunes you have is that you're a guy. 9/10 people with Lupus are women. It might be one of the reasons you are having difficulty. We do have a male member here. Bill. I know he'll see your post and reply with some great advice for you from a man's perspective. In fact, I was having trouble with rheumatologists. I decided to see an Internal Medicine Specialist instead. WOW. Best thing I ever did. She took me seriously, and put the puzzle pieces together in record time. Hooked me up with a rheumy, got me into the hospital, and boom. I was diagnosed and treatment started immediately.
You do have a diagnosis of MCTD. That's a positive step forward! MCTD is treated with the same medications, and attention as Lupus. In fact, my Lupus diagnosis has sort of changed to MCTD as well. Lupus is one of many mixed connective tissue diseases. I have more than one, which is why my diagnosis has a new name. I'm confused. Your rheumy gave you a diagnosis, but you've been told by that PA to start over? I think finding a new rheumy to go to is needed, or get a referal to an Internal Med Specialist.
I really hope you stick with us, Red. I think we can help you get rolling in the right direction. Plus, you need to know you're taken seriously here. You and your wife need to know that.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Co-Moderator for the Lupus and Fibromyalgia forums