Wellness

[butterfly123]

Thanks to all of you for the information and the time spent helping me. I am very appreciative.

[Mindy D]

Hi. The doctors I posted about are not just specialists, they are the world's leading experts on your condition. There is a big difference. Try contacting Dr. Paul Sheel. You should also look at the references posted to arm yourself with the best clinical information.

See Dr. G. Moroni's article from 2006; Long-term Outcome of Surgical versus Medical Procedure in the Treatment of Retroperitoneal Fibrosis.

When patients go to specialists for treatment or rare disorders, where do you think their specialists turn for information----to the work of experts.

[Mindy D]

To locate articles there are many ways, the easiest is to just type the name of the doctor into the Google search window space and add some keywords from the title of the article or type in the full spelling of your disorder.

[NYwoman]

You can look up doctors info in healthgrades.com .

You can get the best information and even assistance from NORD.com . It is the National Organization for Rare Diseases. Your disease (and mine) is on their list. Look through their website and contact them. If there is no one near, find a good internist (Internal Medicine specialist) they are great diagnosticians and know how to work with rare diseases.

[Mindy D]

I agree about NORD.

[newziesuzie]

On 5/13/2014 butterfly123 said:

Thanks to all of you for the information and the time spent helping me. I am very appreciative.

I can't add to the suggestions but wonder if your own current doctors aren't helping you search? Prayers to you for success.

[butterfly123]

I had a wonderful Dr. of internal medicine. She is from Puerto Rico and monitored tests bloodwork scans etc. She and her husband decided to move back to P.R. and she is now a rheumatologist. My current internal medicine doctor has explained that he is very uncomfortable with not only the R.F. diagnosis but also with the other uncommon medical issues I have. In answer to your questions

The Dr. has said he will refer me to anyone I find

The Dr. who conducted the clinical study at Mayo for RF at last check is practicing in California.

I have been to Mayo and for numerous reasons I do not wish to return

I am going to send my first CT scan and my last CT scan (performed last week) to John Hopkins for their team to look at and diagnose (utilizing their team of doctors and radiologists)

The treatment medications that are the protocol for RF have had serious side effects and the methotrexate (sp) was not well tolerated at all.

I searched for and saw another doctor. I was told she was experienced with my diagnosis. After two appointments I point blank ask her how many patients she has with RF. Her response was "just you, but I want to keep you as a patient". I ask her of what benefit it would be for me to continue to be a patient and she said because you are the only one I have (meaning with RF) This is not a workable situation. She is not experienced in this disease and the medical facility IMO were not honest in telling me she was.

Most importantly, for those of you who responded with information for me to look into I wanted to thank you again. Your

[butterfly123]

Sorry, the webpage kicked me back to sign in. The doctors have not been helpful overall, except for the one I mentioned in the last post.

Thank you to all of you who responded with helpful information. I am thankful for your kindness and caring.