Confused by my rheumy?s statements

[Carolina]

Oh dear Mirkesh Cat,

You have validation of your conditions and experiences!  Even a diagnosis of something unexpected and possibly scary validates you, your perceptions, your experiences, and mostly your patience, persistence and acceptance that you had to keep seeking medical advice until you were satisfied!  Bravo, Mirkesh Cat!

I can tell you that in 2011 my Duke Rheumatologist included a chest x-ray in her routine screening of my health when I was a new patient for her.  SHE KNEW TO LOOK AT MY LUNGS.   I didn't express a single concern or symptom about my lungs.  But she ordered that test.

I suggest that you write another letter to your ex-rheumy, with this new diagnosis sent, not in anger, but in an effort to show him that he missed a major condition and diagnosis.  Include any written diagnosis from your new doctor.  You will do this to help yourself let go of resentment against that ex-rheumy.  He may or may not learn something, but you can begin to close the door of remembering how wrong, dismissive  and cruel he was to you.

For living with chronic conditions, as we do, our physical and emotional strength and stability must be reinforced as much as possible.  You have reinforced both with your persistence in seeking help.  You can now help yourself by closing the door on that ex-rheumy and his mistakes.   That will help you emotionally, and that will also help you physically in the long run.

Thank you so much for keeping us up-to-date on your experiences.  It isn't at all nice to hear that you are in the early stage of lung fibrosis.  The term 'early stage' is hopeful.  Now you can do what you need to care for your health.  And now you know what you have many of the symptoms you experience.  Knowledge is power.

Hugs,  Elaine

[cccourt1942]

What Elaine said!!   

[kimberly64]

I am finding the more I go to different doctors the more I find they are getting paid to do nothing, especially these so called specialist!  They are not caring for and treating patients. They are passing difficult cases on to others and it keeps going and going and these doctors are giving the ones that actually do care and spend time researching a disease and helping people a bad name.  These doctors tell you you are stressed and thats the problem so they can send you out the door sicker than ever with no answers.   I wish for all those specific doctors to come down with this particular disease so they will understand.   Yes I am angry.  I found only one good doctor and I guess I was lucky it only took 6 months to find him. but had I had a doctor that cared in the beginning I may be better by now.  Just had to vent. I hope you get better!
Kimberly

[warmwaters]

Mirkesh

I am so glad that you kept trying til you got some answers!  It can be very hard to do. We all learn to trust doctors when we are children, and if we are unlucky enough to get very sick, we have to unlearn it.

I hope that your treatment goes well.

[MirkeshCat]

Again, thank you all so much for your interest and your hearty replies! I really appreciate that!

My pneumologist has suggested that I will have to see a (new!) rheumy for obvious reasons, an urologist for my bladder problems (interstitial cystitis?), a haematologist/oncologist to see about lymphoma or blood changes and an endocrinologist because of the Graves. After I have all the results/reports I will update you guys, if you are interested.

Mirkesh

[quietdynamics]

Again, thank you all so much for your interest and your hearty replies! I really appreciate that!

My pneumologist has suggested that I will have to see a (new!) rheumy for obvious reasons, an urologist for my bladder problems (interstitial cystitis?), a haematologist/oncologist to see about lymphoma or blood changes and an endocrinologist because of the Graves. After I have all the results/reports I will update you guys, if you are interested.

Mirkesh

MirkeshCat,

Be REALLY PROUD of yourself!

Early in this journey I had a general practitioner "decide" that my symptom were due to depression. I told that Dr. he was "depressing"

With the help of a therapist I did push and get answers and better Drs. 

The therapist would say to me " Only You know your body". Fortunately for me the therapist has a strong medical education, she became my 'rock'.

Got a Dx from a Rheum, dumped the GP, kept the therapist to help me navigate life with chronic illness.  Still no classical depression.. after all these twists in the road.
Overwhelmed, exasperated at times.

But, we muddle through.

Sounds that you have a good team now, and I wish you the best.

With your experience with the 1st Rheum so fresh in your journey, if it takes up "head space".
I would take the advice of Carolina and send the information to that Dr. give him a wake up.. then let it go, as you need your energy for yourself and the new Drs.

Turn a bad experience into hopefully something good, in that the Dr. may be more diligent with the next patient.

[warmwaters]

Please let us know how you are doing, when you know more. And always feel free to just come and talk.