Discussions By Condition: I cannot get a diagnosis.

Mixed Connective Tissue Disorder?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: piperl4
  • November 11, 2008
  • 01:14 PM

I have never used a forum to discuss my condition but I have reached a point of total fustration. Starting in Feb 2007 my life has been turned upside down by an illness that to date no Doctor has been able to detremine what it is. I have an appointment at Johns Hopkins but not until January 2009. I hope no one else has this as I would not wish it on anyone but just maybe someone can shed some light on the direction I should turn. All the Doctors have been great and tried very hard to figure it out but all admit they are baffled.
50 % of my muscles are extreamly painfull to the touch and ache all the time. I cannot stand for more than about 15 min before my legs just hurt to much. The worse pain is at the last 1/3 of the muscle. this includes my chest where I have labored breathing and feel every breath I take. All blood work to date is normal and emg is normal. I do have a herniated L4/L5 disc but they say it is not causing it. There are cyst developing on my kidneys and multiple internal things like ulcers of the stumach and colon. Headaches are the norm. Early on my bloodwork showed mild anemia, elevated liver and kidney functions test. This all started about the same time I was diagnosed with MRSA that appears to have been contracted at a local hospital through an open sore. It developed really bad and before they were able to get it under control actually put some sizable holes in my skin on my head. After 3 months they declared they had it under control and I spend another 3 months on oral antibiotics. Right now the Doctor says there is no connection. There is vertually no specialist I have not been sent to and no MRI or CAT scan that has not been done. Even a complet vascular workup was done to look for PAD. The only adnormal thing was reynolds syndrom, that was found durning the test. Again by itself not a major thing. The MRI showed there is fluid around the knee joints but not a large enough amount to cause this kind of pain. I do have mild arthritis in most areas but again not enough to cause this kind of extreme pain.
I am just trying to find out what specialist would be the most likely to know what is going on.
Any help is good help right now

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