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...

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Blood Tests vs Symptoms

Unicorn01
Unicorn01
I was at the Rheumi yesterday. Complaints - exhaustion, pain, difficulty swallowing, memory loss, swollen joints, muscle weakness, headaches and painful rash on my face (especially eyelids, they look raw). she took my blood pressure which was normal. pressed here and there and told me to go for blood tests, however in the same breath she says my last blood tests doesn't show anything to worry about. she cant understand why I have pain due to inflammation. I am feeling as if I am pathetic and the side effects are not real as my tests don't show anything and all she did was give me a piece of paper to have the blood tests done with 'I will call you if there is a problem'. Does anyone have symptoms, but blood doesn't show anything abnormal and thus you don't get treated?
speechteacher1
speechteacher1
There are many times when I get "your labs were normal" from the doctor. How are they normal if I'm still sick, right?? You are not the only one going through these symptoms with seemingly no excited response from the doctors. Sometimes I wonder whether or not the doctors really know what to do with our symptoms...they don't know it all and the more I learn the more I am understanding how special we are with MCTD and all that comes with autoimmune diseases. Keep researching health information on each of your diagnoses, keep in touch here with our MCTD group and if you are not satisfied with the level of care, concern and treatment you are receiving, then don't be afraid to seek out a new doctor. This is your life and everyday is precious. I had a horrible doctor in the past and it took me years of feeling horrible and finding out I had a serious autoimmune illness from a different doctor in an emergency room to get up the courage to get away from that old, horrible, lazy doctor and find a new one. Keep looking into getting more answers and I'm praying for you to get some relief.
Speechteacher1
dragondog2
dragondog2
Hello,

I was diagnosed with MCTD in 2013 and just joined this group. Recently, I decided that my symptoms are real; regardless if my Rheumi changes any treatment. I am in agreement with speechteacher1 that the doctors do not always know how to treat various aspects of the disease and it is important to continue your own research. I have been told by different doctors that inflamation causes pain...does with me. It has been awhile since you posted this, I pray you are feeling better by now.
RavensHaven
RavensHaven
I'm so sorry for your frustration! It's part and parcel of this disease. I've been dealing with it for 30 years...back before it had a name and before the doctors even recognized it as anything! Talk about frustrating!
I"m still looking for another doc or two. My rheumi is a jerk and my GP is clueless. Keep looking for a good doc and stay positive. There are remissions with this disease. :)
sabbi2015
sabbi2015
I am in the same boat as you. I have had symptoms for 7 years yet my blood work is always normal. This past winter has been one of the worse and although my doctor can clearly see and feel inflammation in different areas of my body and even though she thinks it is MCTD she does not seem to know what else to do. I am waiting to get in to see a Rhuemy and I hope I get someone who is willing to treat me regardless of my blood work.

Presently every time I go to the doctor for any type of pain the answer is inflammation. "Oh you have a lot of inflammation there." That's nice but may be you can try figuring out what is causing the inflammation! Just a thought, right??

I feel you frustration but hopefully you'll get answers or someone willing to treat you regardless of the blood work.