Desperate for good advice

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New Member

Date Joined Sep 2011
Total Posts : 3
   Posted 9/1/2011 12:46 PM (GMT -6)   
For the past 6 years I have had the following symptoms (they have gotten much worse since the birth of my son almost 3 years ago): muscle weakness (every day), muscle and joint pain (every day), unusual fatigue (even after 10 hrs of sleep), tenderness to touch all over body (feels bruises), very tender and deep soreness on left side of back under rib cage, hair loss, occasional mouth sores, redness around nose that never goes away, occasional redness on cheeks, chin and eyelids, sensitivity to cold (not Raynauds), sensitivity to sun and tanning beds, frequent headaches, loss of appetite, trouble swallowing.

My dr referred me to a rheumatologist thinking it was lupus. The rheumt first told me it was fibromyalgia, then 7 of 8 lab results came back with positive ANA. was told twice by rheumy that it was lupus. Put me on Plaquenil. Within a week it was obvious that I was allergic to it. Called the rheumy to be told that Plaquenil is the only drug he prescribes for lupus. I told him that I was going to another rheumy for a second opinion. Trying to get the lab teats sent over to new dr, he is now telling them that I do NOT have lupus. My family doctor is not willing to refer me again. This process has me so depressed and I don't know where to go from hete. I am trying to raise 2 small kids and I am in constant pain. Does anyone have ANY suggestions for me? I am currently sitting in my family drs waiting area yet again to speak with the doctor about getting me in somewhere else but I am discouraged.

Veteran Member

Date Joined Nov 2010
Total Posts : 877
   Posted 9/1/2011 1:47 PM (GMT -6)   
Do you have to have a referral? Most insurances don't require them anymore. I make appointments with a doctor, give them insurance info and then go. Never was asked for a referral. Now there have been times when I have asked the office staff for a referral because I wanted their opinion or advice on a good doctor and they were always willing to help. I don't understand why they would not give you another referral. Maybe you can contact your insurance company directly and ask them to refer you to a rheumy covered by your plan.? I am sorry you are having such an issue, unfortunately it happens way to often.
Rheumatoid arthritis with secondary Sjogrens, Fibromyalgia, meniscus tears in left knee, Cancer survivor

New Member

Date Joined Sep 2011
Total Posts : 3
   Posted 9/1/2011 9:29 PM (GMT -6)   
The clinic that I found does require a referral. After an emotional break-down at my family doctors office, he did send the referral along with all of my test results. His guess is either lupus or myositis but wants the new rheumatologist to make the diagnosis. This sure is not an easy process. I am still interested in any advice on dealing with everyday pain and weakness.
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