1320648 tn?1277503220

Mixed Connective Tissue Disorder

I am a 63 yo man who was healthy until 5 years ago when I developed an onset of joint pain, headaches, fevers up to 104.0, chills, nausea, vomiting, and fatigue. Flares occurred every 90 days like clock work. I was worked up by reputable medical center for Infectious disease, cardiac, rheumatology disease, lots of blood work, bone marrow biopsy, MRI, CT scans, etc.  Every result was either negative or marginal. I was found to be anemic, positive ANA low titer, elevated sed rate, and low RBC count.  Initial I was treated with plaquinel and folic acid. After about eight weeks m  flares occurred less often and fevers were low grade.  Other symptoms continued and cognitive dysfunction started.  About six months later I was put on Methotrexate and titrated to 25 mg. injections per week. Began to feel a little better but joint pain continued.  About 3 months ago I was put on Humira injections biweekly. At present feeling much better. Naproxen helps joint pain when needed which is about every 3 days. More energy and mental fogging improved. Current diagnosis is undifferentiated mixed connective tissue disorder with primary symptoms reminiscent of Lupus. Has anyone had a similar experience? Please share.  Thanks.    
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1320648 tn?1277503220
I'd really like to hear your story, that is, if you don't mind disclosing it. If not, I understand. The stories of others help me feel like I am not the only one out there struggling with this bizarre disease.
Have you been diagnosed?
Best regards,
Helpful - 0
My name is Brett. I'm 51, combat veteran from Desert Shield/Desert Storm/Provide Hope, Bosnia, Serbia, Kosovo to name a few. When I got out in 2000, I had Congestive Heart Failure within the month.  Later that same year, I awoke with the most foul taste when I burped. Just recently I realized it is identical to when you have eaten hard boiled eggs, and then burp.  3 to 4 hours later I was violently ill.  It lasted approx. 12 hours, and I was ok.  This would occur every year or two.  Fast forward to this time last year. Now they are every 60 to 90 days, last 24 to 36 hours, and I often pass out at the onset. I have knocked holes in walls, and on one occasion managed somehow to have my ankle straps still tight around my ankles....but had curled my feet all the way out of thick leather woven sandles. I know this will kill me, and I dont mean in a few years. I mean the next time. I have tried drinking Pedyalite prior to the onset to no avail.  I heave until it is just hot bile coming up, and I cant breathe anymore (not too mention the watery diarhea that comes out with the same force from dehydration.)  I do this for 5 to 7 minutes, I get myself to my feet when I can...crawl when I cant to the shower. Here it happens all over again. When I am lucky, I make it to bed, shaking uncontrollably from the chills, where I fall asleep sitting up. If I am lucky, I sleep maybe 10 to 15 minutes, and when my eyes open...its already coming out again.  This is the next 24 to 36 hours straight for me.  They have me on Keppra, but it hasnt helped. They have run Eegs, MRIs, CAT scans. They tell me I have an aversion to light. When I taste that burp, there is nothing I can do. I have faught face to face with the enemy, driven through mine fields while being shot at, but this will kill me. I cant go through it again. 2145373120. Please someone help me. Thank you, Brett
848718 tn?1257138801
Wow -- I could have written your post, except I'm younger, female and after I had a bad reaction to Plaquenil, have been untreated except for symptoms, primarily with pain meds. :-(

I'm glad you're getting treatment that helps. I understand some folks never get beyond the UCTD/MCTD diagnosis. Which is actually good, because as I understand it, the likelihood of organ involvement is low if your disease does not progress to the point of getting a more specific Dx.

Good luck!
Helpful - 0
1320648 tn?1277503220
Thanks for sharing. Have you tried Naproxen for the pain? I took Tylenol and Advil but found that Naproxen which is stronger and last longer worked better.

Were you diagnosed with Lupus? How long did it take to get your diagnosis?
Helpful - 0
434278 tn?1324706225
Thanks for sharing your story.  It seems we all have different stories.  I have a lot of neurological symptoms.  Joint and muscle pain seem to be the one that screems the loudest.  Every joint in my whole body screems.  Also fatigue.  I have diarrhea, headaches dizziness, nausea, hair loss, flank pain and upper quadrant pain.  I too (along w/ so many others on this forum) had a difficult time getting a dx.  I finally spend some time in the sun prior to some lab work.  It caused my ANA to spike, thus causing the dr. to take notice.  My ANA even got up to 640 w/o any raised eyebrows.  But when it got up to 2,560, they had to take notice!  

I am currently on plaquinel, but have started to have more flares closer together.  Some of the original symtpoms are coming back.  I just hate going to the dr. and I hate taking medicine.  I take 2 tylenol and 2 ibuprofen when the pain is unbearable.  Most of the time it takes the edge off.  
Helpful - 0
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