Seeking help - please read my story.

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InHisHands
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 1/24/2011 10:34 AM (GMT -6)   

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. 

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straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16272
   Posted 1/24/2011 11:22 AM (GMT -6)   
Hello and welcome to Healing Well's chronic pain forum. I am glad that found us but very sorry that you have to be here. Every person that comes to this forum has their own story to tell as to what led them to thw world of chronic pain. No two stories are alike but one thing we all have in common is pain.

I had no clue what your condition was all about so I did a quick check at the Mayo Clinic and read about it. Do you believe your condition is in remission? What about the Fibro, is it active now and are you getting treatment for the Fibro. Many of your symptoms do sound Fibro related from what I know about it. Have you considered going to another auto-immune disease specialist, or even a rheumatologist for another opinion? I can't answer why your drs are not listening to you, that seems to happen to a lot of us when you mention the word pain. It is getting harder and harder to get drs these days to give us the attention we need so desperately at times. And they wonder why we are stressed out!! A lot of us here at the forum see pain mgt drs but we also have a working diagnosis in place by the time we get to see a pain mgt dr. another thought would be to look for a teaching hospital in your area. Those drs are constantly working on different types of treatments for different diseases. We don't normally see the big ego thing we see with so many private practice drs too. Just don't give up on this no matter how frustrated you may get, you need answers and the right dr can be found, just takes a lot of searching. There is nothing wrong with advocating for your own care either, you know your body better than anyone.

Again, welcome aboard and keep us posted on what you come up with in the dr dept. Take care.
Moderator Chronic Pain Forum

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 1/25/2011 1:02 AM (GMT -6)   
Hi and welcome!

One thing I would strongly suggest is to find a new medical team! I agree with Straygod...find your nearest Teaching/University hospital. I quick internet search should do or look in the Fibro 101 thread for a link. Sounds like your doctor is your worse enemy.

Good luck,
Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.

"Gravitation is not responsible for people falling in love." Albert Einstein

emeraldkimmy
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/25/2011 1:18 AM (GMT -6)   
Have you seen a pain management specialist? They are the doctors who typically treat fibromyalgia and they may order more tests. Often people with fibro spend years and years being told it's "all in their head." I don't know about doctors in Ohio (I'm in Oregon) but there seems to be a collective attitude among those who don't understand pain that well.

I hope things go well for you and that you finally find the medical attention and pain relief that you need and deserve.

KBH
Chronic back and neck pain - car accident, degenerative disc disease, chronic kidney stones, uninsured.
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