diagnosis from my neurologist

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Regular Member

Date Joined Jul 2011
Total Posts : 43
   Posted 11/17/2011 3:18 AM (GMT -6)   
Can a neurologist diagnose connective tissue disease? Mine told me that I have it without a questionable doubt. He went over all my past records from my rheumatologists and other records I had for ANA tests. He said that stuff wasn't going to show up in someone who didn't have the disease and where plaquenil helped me some was proof of it. My other doctors have thought otherwise and I told him this and he says they are wrong. I don't have high inflammatory markers or low RBC or WBC's. I know he's right, but I don't understand why my other doctors can't see this as well.

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 11/17/2011 1:12 PM (GMT -6)   
Neurologists can diagnose autoimmune connective tissue diseases but rheumatologists are internists who are trained to diagnose and treat them and are usually a better choice.  It can depend on the interest and experience of the individual doctor.  I would interview any doctor you are thinking about using in regard to their experience with lupus and/or connective tissue diseases. 
It is often a better choice to find a rheumy who practices at a large teaching hospital where they will see many different types of cases and share their experiences.  That is not always possible and there are good rheumies in private practice but they can be hard to find in some areas.
Diagnosing most autoimmune diseases is not easy and it can take months or even years to get a confirming diagnosis and proper treatment.  Labs often do not show up or can be variable.  An experienced rheumy will look at clinical  symptoms, labs, response (or lack of) to earlier treatments and make a diagnosis.  It too me 14 months from the first sign of a problem to a firm diagnosis.  However, my doc had already figured out what I had and was treating me aggressively before he got the final confirmation of MCTD in a lab test.  Some AI diseases do not have a gold standard test and that is why training and experience is so important to diagnose and treat these mysterious diseases.  Most doctors just do not have the requisite interest, training or experience to treat them.  A good doctor should refer you to someone more qualified if he/she suspects a disease out of their field.
Your experiences are more the rule than the exception.  I have talked a lot about both diagnosis and treatment hell.....most of us go through it to some extent and some never get out of it.

Regular Member

Date Joined Jul 2011
Total Posts : 43
   Posted 11/18/2011 8:52 AM (GMT -6)   
I have to drive an hour away to see a rheumatologist and I have chosen not to. I don't know if I want the aggressive treatment that comes with this diagnosis. The side effects of immunosuppressants, I don't think it's worth it. He treats patients with Lupus, and he's been trying to calm my symptoms down as well, but I don't want to take very many medications, I've become too hypersensitive to it.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 11/18/2011 11:14 AM (GMT -6)   
Can you share with us what treatments you are receiving?

My lupus is very "quiet" and I've never had any serious side effects from immunosuppresants or other medications -- and at one point my neuropsych tests showed a 20 point decrease in IQ. I also had enough fatigue, joint, muscle pain, and neuropathy to keep me sleeping 18 hrs a day & fairly couch-bound the rest of the time. Returning to my regularly scheduled life is certainly well worth the risks of a few side effects (most side effects rarely occur, but legally have to be included).

The neurologists here (Atlanta, GA) won't touch a Lupus patient, and I'm wondering if you are being treated much differently that a rheumy?
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde
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