MCTD (Mixed Connective Tissue Disease)

Welcome to the group @faithandlove, its nice to meet you and the other members here. I had been in the lung ( MAC) group the past six months discussing my lung nodules found when became very ill last year. I am happy to have a good report and healing in my lung and focus here with others in mctd group. There are so many mctd illnesses im sorry your having a hard time with disgnosis.
For me there has been s progression since i started having psoriasis at 18. I was diagnosided first at 26 with fibromyalgia, 30 psoriatic arthritis and degenerative disck disease. Im 46 now and was diagnosed last year with RA and lupus, after a bad bladder, uti, lung infection and systemic rash with hypersensitivity reactions. Shellfish i can no longer be around, the worste, lol. I do not have rheumatoid factor but with the venous swelling, joint sweelling, night sweats, lung involvement and Sponylosis, my doctor has been active in my care. Methotrexate has been the key to my health, if its withdrawn i get very ill and the rash starts back, never going away. Its most difficult during the diagnosis stages. It gets better when we find the appropriate medications for our bodies. I look forward to hearing from you and others in the community.
Julie

I appreciate the sleep information, ill read them this evening. Its nice to meet you, pls see the post below i wrote to @faithandlove. Hoping your having a nice afternoon.

Julie

I am so sorry you are going thru that.

Your nice for saying that. I am now a patient at MUSC in south Carolina, in good hands, like you will be at Mayo. I had my first hip injection a few weeks ago and its doing much better, next is another back injection. Have a good evening, Julie

Hi Julie, @jewel8888,

Thank you for joining this discussion, and sharing your story. Since you mentioned MUSC, I just wanted to jump in and say that we lived in Charleston for a number of years, and still have our home there. I do miss South Carolina!
We appreciate your participation in the Connect groups, so keep talking (posting), and let us know anytime how the Connect community can help, as well.

Yes, the frustrating part is that they haven't done any genetic testing yet and they seem reluctant to do so, even though I am willing to pay.

@faithandlove, Mayo Clinic does genomics testing and might be worth exploring. You could also request an appointment or call them to find out more.
http://www.mayoclinic.org/departments-centers/clinical-genomics/overview
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

John

Another place for genetic testing that may even be free:
https://genesforgood.sph.umich.edu/

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

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?