Posted 6/28/2009 10:23 AM (GMT -6)
I also have mctd and had an extreme case. However, every case is different and they range from almost not noticeable symptoms to life threatening. No one can tell you how yours will progress. MCTD is a combo of lupus, scleroderma and polymyositis and you can exhibit symptoms of all 3 or any combo of them.
Lupus hit my kidneys and joints and I had severe muscle pain and swelling in the first few months. The main symptom I had from sclero is raynauds which is no big deal compared to everything else. Polymyositis which is an idiopathic inflammatory muscle disease hit me the worst even though I was being treated. I lost 40lbs of muscle in a week even though being treated with 60mg of pred for several months. It was resistant to treatment and it took a maximum 5 day treatmtnet of ivig to save my life. I spent many months in hospitals and was completely crippled and could not swallow anything. It was terrible but my case was off the charts and not typical.
The reason I am telling you this is not to scare you but to give you hope. I am not leading an active life playing golf, skiiing, tai chi.....well, you get the idea. I will never be 100% again but life is good. I am 66 by the way so recovery is possible even at my age.
I don't have a lot of time right now and will respond in greater detail later but I would recommend several things:
Get a second opinion. You said you live in AL...there is a Mayos in Jacksonville. Not sure if there are any good rheumys in AL or not. It is hard to find experienced docs to diagnose and treat this disease. If you have a significant loss of strength you will need to go through physical therapy to get it back. In some mild cases where the loss is minor it might return on its' own but in more serious cases it takes lots of PT and then working out on your own like I did it.
Don't worry so much...you need your sleep. Most likely, if you get the right docs and aggressively treat the disease you can live a long life. I plan to make it to 95 and keep on skiing. Don't take the stats seriously as they are based on only a few cases as this is an extremely rare disease that manifests itself differently in every case.
There is another forum you might want to post on. www.myositis.org
. You will find others who have mctd. The myositis component of mctd is usually the worst....but not always.
Hang in there.
MCTD (lupus, scleroderma, polymyositis). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005. Recovered and now active in skiing, tai, chi, hiking, golf. Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.