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MCTD (Mixed Connective Tissue Disease)

Autoimmune Diseases | Last Active: Sep 18 10:07am | Replies (225)

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@judeeo

I have connective tissue disease which really means your aota,vascular,feet,legs,hands,arms,shoulders joints hurt terribly, maybe a different area each day.
The pain has gotten much worst. I di not know I had this unmaeed tissue disease until I had major aorta burst-dessection,disscetion also od caroids and stomacjh aort, then hour afrter that surgery my aorta heart valve had to be replacede.
I have since been in pain. However you look absolutly great on the outside so unless you tell people you have horrible pain and when u do they say" oh that cant be true YOU look GREAT!"
I am in a study at UAB ib birmingham as they are trying to name it as several in my family have signs or have it.
I ask has anyone had the lower back of thier skull hurt so bad -especailly when they lay down that they have to put a bag oof ice under it to try to help pain?
Lora tab does not help at all.
Does anyone out here have a connective tissue diseaser or symptoms of it?
judee

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Replies to "I have connective tissue disease which really means your aota,vascular,feet,legs,hands,arms,shoulders joints hurt terribly, maybe a different..."

Hello @judeeo. I moved your discussion about connective tissue disease in to an existing discussion on mixed connective tissue disease. I did this so that you could read through the existing discussion on this disease and meet all of the members already talking about living with this disease.

If you are replying by email, I encourage you to click on the VIEW & REPLY button. Then, you will be brought to the full conversation and will be able to read through the other members posts about living with a connective tissue disease.

@judeeo, you mentioned that Lora tabs do not help? Is this a type of medication? Has your physician prescribed any other therapies or medications to help you deal with the connective tissue disorder?