For those of you reluctant ..

[Totie]

I read here at times about being reluctant to question doctors, after all, they are the doctors, and unless we have slept in a Holiday Inn, they are correct.

I can attest to doctors being wrong and encourage people to ask questions, or change doctors.

I have been misdiagnosed so many times, or the first time around they could not figure out my problems. I have been told it is depression, anxiety only to find out there really was something wrong.

My graves/hyperthyroidism was diagnosed as depression/anxiety.
My mass/lymph node pain (under jaw), and submandibular gland was diagnosed as anxiety
My Intesterial Cystis was diagnosed as drinking to much fluids.
My complex cyst on the ovary was diangosed as menopuas symptoms
The mass in the abdominal/pelvis area was diagnosed as (nothing to worry about, but can't be sure what it is).
My abscess in the left buttock area was diagnosed as hemorroid, use preperation H. ..

My weight loss due to depression
My chills/ night sweats due to perimenopuas
My muscle aches in the thigh/left arm due to fibro/peripheral neuropathy , all though did not have the trigger points for it. One neurologist said i had nerve damage, another said, there is NOT any nerve damage.

As of today i have had:
Graves/hyperthyroidism (TT)
Sialdentisis (submandibular gland) , two enlarged lymph nodes (lymphadenopathy), two masses of unknown etiology, calcifiedl ligament  surgically removed and abscess with two different infections (K.pneuomnaie, Strepposculous (sp?) cut and drained twice, it refused to go away....took two months to get that cured.
My left ovary with a complex cysts removed.

I am due for bladder surgery, due to fallen bladder, but have that on hold for the near future. (Need to get over the laporatomy).

Two weeks ago had another lymph node giving me problems in the back of my neck, behind ear. It is hard and in place. So i went in to get it looked at. (saw different dr, my regular was out of town) Dr. sending me to a NEW ENT. Two days after that the lymph nodes in the groin area where hurting, so went in a second time in two weeks. They said the lymph nodes are enlarged there as well. This doctor asked about my history. I had to laugh...He asked if anyone every told me why i had lymphadenopathy and had to have two lymph nodes removed, i said, nope. He decided to do blood work. He also had me do the PPD (tb skin test). Went back 3 days later to get the TB test read and to my surprise it was positive. I was not aware that TB is not just the lungs.He set me up with an infectious disease doctor.  Two days later I get a letter from him stating that I also tested positive for EBV and to make sure I keep the appointments with the ENT and Infectious dr.

Maybe i have finally found answers to my health problems.I don't know what made him run those tests, but no one had ever run them before, so I am glad he did.

I will keep you guys posted. I am not allowed as of yet to return to work until the Infectious disease dr. comfirms it is not active TB.

Anyway, that is my story. I have never been one to question anything they tell me. I have always been to afraid they would think i am a hypochondriac or tell me it is depression/anxiety. Not even after all the documentation I have on their misdiagnosis....

[stella5349]

Good Luck Totie,

and one more thing. I couldn't of EVER got to this point without finding this board. I read somewhere from Smilerdeb on how this board gave her the strength to find answers and had support here to rear up and find the truth to get her well too.

Same for me. I knew I wasn't getting better and found this board. Everything I read - made sense and that gave me the strength to fight back and find my answers.

I only hope I can return what I got back to this board

No one deserves to suffer this - or anything for that matter.

[Totie]

You are correct on everything you said about questioning doctors.

I am glad you are finally feeling better and getting answers. I still feel like ****, but I can't stand to be home doing nothing.

I know we must learn to weather the storm, but we must also learn to dance in the rain.

[Totie]

I was took the test March 6 and was diagnosed March 9. I am however released to finally go back to work Monday. The chest x-rays were clear so I am not contagious. I did have to have two MD's sign off on me not being contagious because I do not see the infectious disease dr. until March 31st.

I saw the doctor Friday and he rechecked my lymph nodes and tells me there is definetly something going on with my lymphatic system, but it is out of his range of expertise.

I do go see the ENT next Wed, so hopefully I will know something then.

[stella5349]

We just get raised in this society to think when we go to the doctor and they tell us what they "think"  - that - that is it - no questions asked further.  

I agree with you entirely - Our bodies tell us something is wrong and we know things aren't right.

Why do we question that?? It such a cycle sometimes to find what's wrong with us. I think we need to get to the point of illness where it nearly distroyes everything we have, then we start to question everything.

After the hell of my personal experience with this stuff. I look back and think how ignorant I was putting up with all the "brush off" Dx's and remained so ill. I ended up losing so much. I lost being a mom for years, a job, friends, - really everything I enjoyed in my life and world.

I got so much back now since uncovering many things and I appreciate so much too.

I still however , really have trust issues when I go to a doctor now. This is something I need to work on. I analize everything. That is exhausting and very hard to always do.

I believe in my doctor who ironically was my original doctor 7 years ago. I saw her PA most of the time and she was in the midst of changing over her pratice over to Intergrative medicine when I first came to see her. Her PA was NOT in agreement with her choice to switch. I saw him regularly, so I didn't know any better.

Now that I returned to her after 7 years and she has  finished her doctoral program in this line of medicine - I am overwhelmed at her honestly on how bad I was treated when I first saw her. I appreciate her doing that, but reality on how frank she is about mistreating me is hard to swollow.  Really I am altered for the rest of my life to a degree and that is so hard to except right now for me.

To ease my mind, I have now put it all in God's hand. There was a reason I found her and returned to her practice. Maybe full circle of knowledge because I know I would never rest without the truth - regardless how horrible it was.  In the few weeks of being back with her - my health is really good. I rarely think about this stuff anymore and I never thought I would get to this point that I could forget I have no thyroid and no symptoms and be able to just be "nornal" again.

[mommy2two2008]

When did you get the TB dx?

[mommy2two2008]

Oh Totie!  Its been a while and I see you have been very busy!  I am SO glad they found it (well - more than one it) and maybe you can start to see some relief!  I tested positive for the EBV antibodies, wow - wonder if I should have the TB test too?  Well - so glad you are still seeking and finally getting answers my dear!