connective tissue disorder?

[wmcfromtemple]

I have had a right carotid artery spontaneous dissection- resulting in temporay blindness, resolved after about 16 years, and a LAD coronary artery spontaneous dissection- resulting MI with left ventricular diastolic disfunction remaining after 7 years, been diagnosed with active TB (Treated) , Renaud's, fibromyalgia, migraines, GERD, IBS, arthritis, chronic fatigue, depression, degenerative lumbar discs, peripheral neuropathy, mild COPD and non specific connective tissue disorder. I wonder if there is a genetic test that could point to a specific disorder so I can find a doctor that knows what to do with me. Right now I have a neurologist, pulmonologist, cardiologist, rheumatologist and family practioner- all of which don't work together and don't know what to do with me. I have extreme fatigue, chronic pain and am literally at the end of my rope. Any advice?

[Lisa Kessler, MS, CGC]

It sounds like you have gone through a great deal, and I hope that the following information is helpful.  As you know, an arterial dissection is a splitting or tearing of the layers of the arterial wall.  There are different explanations for why some people have arterial dissections, but much of the time the cause is not known.  Some research has shown a correlation between reduced production of type III collagen and abnormal type I collagen and spontaneous cervical arterial dissection.  

It may help you to consult with a geneticist who has an expertise in arterial dissection and connective tissue disorders.  A meeting with a geneticist may help you to find a specific diagnosis and may guide which genetic test(s) are ordered to assist with making that diagnosis.  Receiving a diagnosis may help you sort out which of your signs and symptoms are related and which are not.  You can find a geneticist through the American College of Medical Genetics.  In addition, you may want to contact the Collagen Diagnostic Lab at the University of Washington.  Barbara Kovacich (206-543-0459 ) is  the contact person, and they have genetic counselors there to provide email and phone consultation to people regarding testing and decision-making.  

Experiencing so many medical issues and searching for a diagnosis can be very difficult and it is important to make sure that you are receiving the support that you need during this time.  It may help to talk with a counselor with experience in working with people with chronic conditions.   The American Counseling Association website has a counselor finder tool to allow you to find a professional close to you home.  Best wishes to you.