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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yayabeki 06/25/2012

So after a year of chest pain they finally admitted me in the hospital and did a heart cath to r/o blockages n pulmonary hypertension.
All normal yeyyyy. But still does not explain the. Best pai. Numbness and timing down right arm and. Eco / jaw pain. Sent me to neurologist
And he def feels me this is neurological. They took the thoracic outlet dx away and fibromyalgia away. Yeyyyy again . Running MRI ,mra on brain and. Neck to check for clots blocked. Nerves,etc.. Also they are sending me to new Rheumy they feel like all my other sx's are related to disease but. Current rheumy always tells me it's not MCTD... Ugggg
So I guess we are starting from the. Beginning.
Neurologist said after these results come back if no answers he's sending me to Mayo Clinic

deleted_user 06/26/2012

Sounds like you have a good Dr on your side. Way to go! Good luck with your treatment and the new rheumy.

yayabeki 06/26/2012

Please forgive me for not proofing before I hit send WOW
Yes I didn't realize how bad the Dr that is supposed to be in charge can mess things up.., after paying like a million copay seriously

deleted_user 06/27/2012

Giggle. We all have those fun typos and with the brain fog...they can get interesting. I just read around them and then forget them. I had to look back to see what proof reading you needed. ;-)

gabpaul 06/27/2012

Good! Interesting too. I have had numbness and tingling down the right arm as well. It also became freezing once with the numbness and tingling, and I was sent to the ER. They couldnt find anything.

I also have had very high blood pressure readings for 10 days, but I believe it has been high for more than 2 years. I just never knew I was sick, and all the doctors told me my illness was in my head until I was diagnosed with MCTD, Raynauds, and Livedo Reticularis. I see a cardiovascular specialist today and I have an MRI on Monday. Insurance did not approve of the MRA that was requested until we get the MRI results.

I feel like my rheumy and my internist are ignoring my concerns. Every day, I am dizzy and nauseous. I generally get a headache at some point in the day.

Please keep us posted!

Gabrielle

gabpaul 06/27/2012

Forgot to mention I have chest and jaw pain at times too.

Thanks! Gabrielle

deleted_user 06/27/2012

For jaw pain, have you asked about "motor tension"? I'd never heard of it till it was a question on y disability forms. My psych told me it is involuntary clenching of the muscles. I have it all over my body and intensely in my jaw. stretching it and massaging it help a great deal with other issues like headaches.

gabpaul 06/27/2012

I have not heard of motor tension. I'll check it out! I have a psychiatrist, but not a therapist for psychological. My psychiatrist want me to have a therapist who specializes in chronic illness. Still looking for one here in DC.

Thanks!

Gabrielle

deleted_user 06/28/2012

I hope you find the right psychologist.

Motor tension, as described by my psychiatrist is just clenching of the muscles. My jaw is always clenched and I notice when I drive my legs and gluts are clenched and when I write I slowly increase the pressure till my fingers are white.

gabpaul 06/28/2012

Yup, I am a jaw clencher.

Gabrielle

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