New here and need advice

[strat1163]

Hi all,

My story sounds very familar to many that have an autoimmune issue. I have always had joint problems growing up and about three years ago I began to have inflammatory issues that pointed to an autoimmune disease but all of my blood tests were normal at that time. This included stomach issues with very loose BM's, abdominal pain shooting through my back with sacrolitic pain, reduced flexibility in hip/back, eye infections, mouth sores, mucus with BM's, extreme fatigue, anxiety that started during this time etc. For the past two years, I have had elevated liver enzymes and I have been working with a wonderful Rheumy who has been my advocate. I have had a upper and lower GI two years ago and both turned out normal and recently had a barium xray that was normal as well. My last two blood tests done by my Rheumy said that they were positive for "crohns" (dont know what was exactly positive). My GI doc said to me that there is no marker for crohn's and was not willing to communicate with my Rheumy. He has been resistent to listen to me and because the other tests were negative he has dismissed this as IBS. My Rheumy has called him but he has not called her back. However, I have recurrent BM's that are painful, cramping after eating, bloating, mucus, extreme fatigue joint pain has spread to other joints. I am on humera and it worked initally but than it stopped. I am still on it and my rheumy is understandably cautious about starting me on remicade becuase of the potential risks. She said that she needs a more definitive diagnosis but because my GI doc has been an ass we are at a standstill. Im looking to get a second opinion with another GI doc. Man, I am just tired of having obstacles in the way on top of feeling like this. Also, I have family with colitis and crohn's. This has been a long three years for me, and my wife. Please, any advice ? What have U done is your case?

 

[shazamataz]

Hello and welcome

Sounds like you just need to be really assertive to get some answers especially since you have crohns/colitis in the family!

Good luck with gteting a proper diagnosis and treatment

 

[strat1163]

I have been assertive with my doctors, sometimes to a fault. The problem is that I am so tired and weak from whatever is happening to me. I am finding that there are doctors with god complexes in Rochester NY that do not want to hear that they are wrong. Especially those that work for a major research facility like Strong hospital and I have heard the same thing from many others with the same experience who live in the area. My previous Rheumy argued that my symptoms are from sleep apnea even though I use a CPAP machine. I told this doctor that I disagreed with him and that apnea would not give me mouth sores, cramping, back pain and he did not want to hear so I switched to the Rheumy I have now and she has been wonderful. She is a new dr. to Rochester and said that she is shocked at the apathy of many doctors in this area as well, when she attempts to collaborate with them for patient care. My primary doctor did not believe that I had anything other than Anxiety even though I had obvious symptoms not explained just by this diagnosis. I took it upon myself to find a Rheumy because he would not refer me. I know that you have good intentions, but trust me I have been assertive. But I am disapponted at the lack of member feedback on my post. Many reads and no replies! Those with experience with their situation would be a great help!:ybatty: