Registered: 1489526746 Posts: 20
Hello all! I am new here... My issues started back in May of last year. First just as GI related symptoms and then slowly progressed to joint and muscle pain, constant low grade fevers, fingers and toes turning white, pins and needles in my legs and feet, itching and skin irritation, dry mouth, hair falling out and debilitating exhaustion. I was first tested for colitis and Crohns when the GI stuff escalated and all that was found was extreme amounts of inflammation in my stomach, colon and upper GI tract. I've always had complex migraines but as these symptoms set in the migraines hit daily for some period of each day, as well. That's when I went back to my PCP and said I thought there was something greater than a GI issue causing all of this. She ran autoimmune testing along with food allergy tests and a Lyme disease titer. Lyme and allergy came back perfect but autoimmune came back positive and with a speckled titer of 1:640. Also inflammatory markers very high. She referred me to a rheumatologist. After waiting 3 1/2 weeks to see him, he made me repeat testing along with a panel and told me today that some of the tests are positive, some are negative so he can't conclusively diagnose me based on the titer and my symptoms. He was also very brash saying he thought I was mentally unstable because I cried in his office when he gave me the news he would no longer see me... I think any one would after dealing with this almost a year! He also kept focusing only on my leg pain and no other symptoms and harping on fibromyalgia and my need for pain meds. Needless to say I won't be back...
But my question is how many other people have been through similar experiences with doctors not willing to research and help? Is it worth getting a second opinion or should I just look into alternative medicine and natural methods of helping myself at this point? I feel very defeated and let down by the medical system on top of my daily symptoms and depressed mood.
A side note... Autoimmune is in my family history. My dad has RA and Sjogrens and my brother has a general lowered immune system which causes him to not be able to be exposed to illness or rebound like normal people. My brother however, stems from being born at 28 weeks gestation.
Registered: 1484762259 Posts: 18
I would definitely get a second opinion. I have been diagnosed for over 2 years now. Same as you, positive ana but everything else is fine. I have joint pain, swelling, burning pain, fatigue, memory issues. My rheumotoligist said it was due to my ulerative colitis. However, that is in remission so my GI and primary disagree. He is giving medication for ra that is helping a bit. I have an appintment with a rheumotogist with Penn Medicine Hospital in May. I am hoping to get more answers. I also get redness and burning in my face on my cheeks and nose when I am around flourscent lights or sun as well as getting dizzy and nausea. My rheumotoligist can not relate those symptoms to anything else going on. We know our bodies best and must keep perusing medical attention and answers.