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oh, my bad, I thought this was a forum for useful information and for individuals to share. Not for hateful snots who know nothing about what one is going through to post their snide remarks. IF YOU DON'T HAVE SOMETHING OF VALUE TO ADD, DON'T ADD ANYTHING!
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Hi, I am new here and wanted to share and seek advice.  I have and will alwasy feel that networking and sharing your story may help others or yourself.

 

I am a 40 YO F, single mother, two children, one in college and one in High school.  The HS child has had many issues with his health and has Sjogrens, Raynauds, Pectoriasis, vaso-depressive syncope, and arthritic changes.  He also has a bone tumor that is diagnosed as several possibilities (Aneurysmal Bone Cyst, Osteoblastoma, Giant Cell Tumor).  It is currently inopeable and shrinking.  It is on T-2 and close to the spinal cord.  Seen several docs on this one.  I am a researcher and seek out the best of the best for my children and myself if i can.

I work full time in a financial firm and full time school for nursing, while raising my sons alone with no financial assistance and going into bankruptcy with my medical bills.  So i have to work, and i have to go to school to have a better job for my family.

 

I have MCTD, Sjogrens and recently DX with Fibro.  I have extreme fatigue, IBS, neuropathies, sleep issues, get sick easily, possible vascular issues, cognative impairment, dizziness, fog, balance issues and migraines.  THe main issue is people do not believe oyu are sick because we often do not look sick.  So work and school have been hard on me, considerate but i know they are not to happy about the issue.  I was dx with Sjogrens about 4yrs ago, MCTD 6 mos ago, and Fibro 3 days ago.

 

 

I am on Imuron, Medrol Packs often, Gabapentin, Paxil, Celebrex, Lortabs, Valium, Immetrex, voltaren.

 I am often scared and alone in this world of autoimmune disease.  WOuld love to continue to chat with everyone.

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I have MCTD and it's a pain in the everywhere! It's rare but not as rare as you think. I'm also a nurse so unofficially what question do you have?
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I also have MCTD and you can always email me if you need to talk. I am also a nurse.
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I also have MCTD and you can always email me if you need to talk. I am also a nurse.
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ok I have had MCTD going on 6yrs and this year has been the worst so far. the arthritis is now in my foot and I was put in a boot and then unable to walk for several months. I'm a traveler and a nurse who values taking care of people. this set back had put a financial strain on my family and a huge chunk out of my life. bed ridden and dependent and always in pain or sleep is also tearing me down mentally. I'm progressing but very slowly. I'm embarrassed to tell people what I have because I have to constantly explain and then they throw me a pity party. I'm just so frustrated! And during severe problems that make me go to the er no doctor wants to touch me in fear of messing up medication regiment so they treat me with the minimum necessary until I can't sew my rheumatologist or primary. I just want to break down and cry!!!!! I can just see my entire body going through this and eventually I feel I'll be totally dependent. I'm 30 and I feel my future is me in a nursing home in the next 20yrs totally dependent begging for someone to put me out of my misery!!! Sorry I needed to let that out
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I was diagnosed 18 years ago with mixed connective tissue disease. What sent me to the Dr. was raynauds in my fingers. According to my Dr., you can stay exactly the same as when you are first diagnosed, or different symptons can manifest themselves at any time. You can also have a normal life expectancy. I have stayed almost exactly the same as the day I was diagnosed!
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Jazzy, my son was just diagnosed with mctd and I was looking for information in this site since I never heard of mctd. Just want to commend you! im a single mother of two children as well. Never give up and have faith in God
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Hi I been dignosed with MCTD for 6years now . So far I'm hanging in there
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Hi my name is Martha
I have been battling with MCTD for 6 years now. If you want to talk or hear my store email me. Thanks
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My mom has been battling with MCTD for almost 15yrs and thank fully things are in control now or apparently kept in control by her sheer determination and will. 

Keep visting the docs and have faith in GOD ! Be positive and accept it instead of getting bogged down. Life is a long journey and there are bumbs to give us a jerk in the otherwise smooth ride

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I know this is a delayed response but just stumbled across your page today. My friend's wife has mixed connective tissue disease. My boyfriend has MS and went through a stem cell(his own stem cells) transplant in June in Chicago with Dr Richard Burt at DIAD. This friends wife is now consulting w dr Burt regarding HSCT for her MCTD. Not sure if he'll take her, but he does HSCT for many autoimmune disorders with a lot of success in stopping the autoimmune activity. My boyfriend has had no new lesions in the last 6 months, whereas preHSCT he had 5 new lesions in 6 months. He breezed thorough his HSCT and has been doing well since. He was back at work within a week of completing the HSCT. It can take a while to recover though. But, if it stops the autoimmune disease, it's worth it. I encourage all of you to check it out. The DIAD (Division of Autoimmune Disease) website has a lot of info on it.
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Hello, my name is Cathy and I was diagnosed last month with MCTD. What symptoms did you experience when you were first diagnosed? What medications do you take?
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Thanks so much for your up lifting article. I was diagnosed last month with mixed connective tissue disease. Do you take medication? I take Hydroxychloroquine 200MG twice a day. How do you feel and what symptons do you experience?
Thanks
Cathy
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i just got diagnosed 1 week ago after 4yrs of searching and one surgery to remove two bad disc in my neck ,it has taken four years of chronic pain for my body to begin telling its secrets my doc has out me on Hydroxychloroquine .
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