My last 15 years has been a nightmare in the health department. I started noticing something was out of the ordinary when my back and neck started hurting fairly often at the age of 10, and sometimes unbearably. And, that I was an insomniac at a very early age (11), with no real understanding as to what was causing either. The Dr’s convinced my parents it was in my head and I was suffering from the effects of traumas to my emotions in early life. Apparently, I was neglected and abused prior to my adoption. So, I left well enough alone and continued to live my life as best I could. BTW - I did this with lots and lots of "therapy" for my "all in my head" symptoms. Very minimal help there I must say. Learned how to cope better with the oddities that had become my life, but no pain or anxiety relief was truly noted.
No tests other than blood work done during this time frame. I did have a spinal tap at 10 when things started happening in my joints (menegitis was on the loose and a big deal at the time)... All tests pointed to my head as the "cause" of my symptoms according to the Dr's.
I later found the blood tests were not ones that looked for anything other than infections and normal counts always taken as part of the normal routine panels. – I’m not against blood as a tell tale heart, just know there is a big difference in the requested tests when looking for something other than the usual suspects! Always wondered if they would have looked harder had the "head case" thing never come into play???
SO, Over the span of my 35 years I had many issues with flu like symptoms, insomnia, bouts of memory loss, random patches of hair loss, attention issues, pain, a dry cough on an off ( though very persistent for a few years before my diagnosis of Sarcoid), anxiety, as well as other strange issues all apparently in my head and ignored by Dr's due to my so called medical history. I’ve continued to have random issues with joints and muscles with no "apparent" reason as well.
In 2000 I was in a car accident and a discovery was made. Spots on my lungs! Upon a closer look, all my chest lymph nodes were completely engulfed in granulomas as well. I have many granulomas in other places, but the bulk was chest related. (Lymph and lungs were predominantly affected, although no other tests were run on any other part of my body but the chest!) Diagnosis – Sarcoidosis!
Since the diagnosis of Sarcoid was placed on me in 2001 I have not been able to get any Dr. to look past this new, confirmed as “not in my head”, illness as the cause of current troubles either! Some still note my past “emotional trauma” as well and ask me to seek therapy and take mood altering meds and ignore everything else I say. Some say it’s the unfortunate side effects of Sarcoid - Even though I was told I am in the quiet phase of the disease!
I was treated for Sarcoid for 11 months by Dr. Baughman (world Sarcoid specialist - lucky he resides in Cinci!) before I decided the treatment was worse than the illness itself and came off of all treatment with blessings from Dr. Baughman. I was notes as in the "Quiet" phase and 2yrs later it was confirmed by the Sarcoid Clinic @ The Cleveland Clinic. I had had enough and went to Dr. Baughman again about a year ago and he did not see any major signs of “active” disease and offered me Plaquinil again to see if it would address my joint issues, then, as I am accustomed to, and not surprisingly, the possibility of support being needed for my mental health., as well as to seek support for my fibromyalgia, and CFS via my primary care or another Dr that specializes in Auto Immune diseases! Um, I could not help but think at that moment – aren’t you a specialist in Auto Immune illnesses?... Can’t you look deeper into this for me if you think the Sarcoid is not to blame…. NO! , WHY? – Because he is either too one track minded about Sarcoid and would rather not or he read that darn history and fed into that BS too!!!!!!!!! He led me to believe it was a little of both.
I need help! There is nothing "quiet" about what is going on with me and I want my life back! Any advice about Dr's in Cincinnati Ohio, or advice otherwise thought to be helpful, is appreciated.