new to forum - all in my head?

Right direction or way off?
seek a rheumotologist - 100.0%
seek another specialist - 0.0%
Just in my head - 0.0%
give up on trying - 0.0%

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New Member

Date Joined Jan 2013
Total Posts : 1
   Posted 1/18/2013 7:44 PM (GMT -6)   
For two years now I have heard the comment, "It is all in your head" more times than I really care to think about. mad I first started having muscle pain and weakness was sent to one neurologist that said absolutely nothing was wrong with me before ever running a single test. I was then referred by my family Dr to another neurologist. Of course after several test the only thing that came back wrong was my ANA was high. So once again nothing was wrong with me. After confronting him about the ANA a year later he ordered the Anti-dsDNA which was negative and another ANA which was positive. now he won't see me until I have another sleep study done. (the first one showed a little sleep apnea but has not been treated) In the meantime I have developed tingling/crawling sensations. I reddish brown circular spot on my leg that fades and darkens. Redness across my cheeks and nose that gets worse when i spend time outside. My hair is falling out, i have no energy, the pain is getting worse i don't even want to get out of bed. and lately i have been getting a lot of little sharp pains in my chest when i breathe. last but not least i feel like i am going crazy cuz i have so much trouble concentrating, spelling and communicating

I am not trying to self diagnosis by no means but my doctors are not doing anything to help. I have finally got a doc in the office with my family doc to refer me to a rheumotologist. I have seen most of these symptoms in patients with lupus and was just wondering if anyone else thinks i might be heading in the right direction or if i am way off.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 1/18/2013 9:42 PM (GMT -6)   
Have a rheumy check it out; these don't sound like neurological symptoms.

You might want to find your local chapter of and contact them. The local chapter will tell you which doctors in your area are active in the Lupus organization -- that will tell you who might consider Lupus as a diagnosis.

Best wishes -
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/19/2013 1:20 AM (GMT -6)   
It's hard for a regular doctor to diagnose lupus because it's so tricky. It has a 1,000 faces. I hope the rhuemy can find out the truth for you.

Ps. My rhuemy diagnosed my by ANA, C3, C4, SED rate and my symptoms.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 1/19/2013 6:13 PM (GMT -6)   
As Lynnwood said your symptoms seem more like an autoimmune disease and a rheumy would be the best specialist to see for AI diseases.  Keep in mind that you might not have lupus and it might be something else.  Best case would be to go to a teaching hospital with both rheumies and neuros who could team up if necessary to diagnose your condition.  Ignoring clinical symptoms is beyond need a different doctor.  Just because the doctor doesn't know what you have doesn't justify dismissing your symptoms. 
Where do you live?  Are there any large hospitals/clinics in your area?  Ones like Mayos, Cleveland Clinic, Northwestern...there are many around the country.  Some of them will have teams set up to handle difficult diagnoses.  You might start with one doctor but end up with another. 
Doctors are trained to look for horses (very common) not zebras (rare diseases that are not common) and some are better than others doing these difficult diagnoses.
Hope you can find an answer and start some sort of treatment to relieve your symptoms.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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