Newly Diagnosed

Hi

I was diagnosed 4 years ago with Lupus and recently after a year of having headache everyday with little relief (due to medication), joint pain that again hasn't completely gone away, muscle hardening, biopsy, mental confusion, memory lapses, delayed comprehension, the list can go on, I was diagnosed with mixed connective tissue disease(MCTD). I joined a lupus group, but now I feel like I don't have a home. I'm like them but not like them. I feel rotten most of the time. I have energy in the morning, but by noon I'm done for the day. I haven't been able to work in a year and my doctor just told me to prepare myself to spend the rest of my life this way. How's that. and she's a internationally reknowed (is that the right word) rheumatologist. I've never opened up on a chat room, but I feel the need to be heard and not be silent at home out of the way.

coolfairy coolfairy
36-40
2 Responses Feb 17, 2009

Take a look at www.lowdosenaltrexone.org I think it holds some interesting possibilities for those of us with MCTD. However, how do you get your doctor to let you try it??? I have no idea what the cost would be either, but I wouldn't think it would be too costly. <br />
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I'm working with an excellent anti-aging (and alternative medicine) physician in Fresno, CA. I had had one treatment with him (for High blood pressure, high cholesterol, pre-diabetes, hypothyroid, insomnia, etc) and ended up being diagnosed with an auto-immune disease the next day via the symptom of scleritis (inflammation of the white part of the eye). By the end of the week, I had my diagnosis of MCTD. <br />
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After reading all of these stories/posts, I feel very fortunate indeed to have had it diagnosed in the early stages. My symptoms are very minimal at this time. PRAISE GOD!! I am having some discomfort in my wrist, which I was thinking may be a gout flare-up. BUT, from reading on these blogs, maybe not. I will have my doctor check it next week if it hasn't improved.

I can understand what you are going through, at first I have diagnosed with migraine, then gout, arthritis, diabetes, fatty liver, alhzaimer's... finally a specific analysis show mctd 3 weeks ago. It is been 6-7 years when I started to have these simptoms. Being under stress is the worst, so think about it, if you are alone at home thinking about the prognosis of your illness and the efect of this illness in your personal live, instead to feel better you feel depress. What to worry about? Live one day at the time and made your best of it!. Yea sure, is easy to say so, I am in your shoes, I am trying to do the same thing, I want to live the best way I can ...and dont forget read your bible. The book of Psalms is awesome.