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Help - Looking for 2nd Opinion

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Posted 5/7/2008 11:34 PM (GMT 0)
Hi All:

I'm in desperate need of some help. I saw my primary doctor today and we've decided I need a second opinion from a good doctor. Not only do they need to be smart and willing to work with a patient with complex problems, but they must also be compassionate.

I feel as if the Navy hospital is stuck in a rut with my care. They (the lower ranking doctors) are intimated but my highest ranking doctor, who also is my Rheumy. He's put in my records that they are doing me more harm than good and not to test me for anything else. No labs to check my blood levels NO nothing. The primary doctor discussed with the Rheumy at taking me off of my meds but he won't agree to that. So basically I'm stuck with a doctor that won't do anything for me.

If anyone has a great doctor that would fit the bill in what I'm looking for please email me and let me know.

Thanks,
Barbara
Posted 5/8/2008 1:59 AM (GMT 0)
Barbara: I feel for you, some docs. just don't know what to do in my opinion. If you live close to Philly I can give you two good names. I finally found very good rheumy's they spaicalize in lupus. Hope you find the right docs. Debbie
Posted 5/8/2008 2:27 AM (GMT 0)
Hi Debbie:

I've put in my profile that you can email me at my address. I live about 2 1/2 hours from Philly. I would love to have a name of your rheumy prior to me coming up there. My current PCM wants to call the doctor that I'm going to be seeing.

Looking forward to hearing from you soon.

Barbara
Posted 5/8/2008 2:36 AM (GMT 0)
Barb,

   ((((Hugs))) I hope you can find a good rheumy soon to get all this stuff figured out...Bless your heart! I'm sorry I didn't get a post in earlier for you.

    I hope and pray you get some more definate anwers and relief soon. Take care and keep us updated. You are always in my thoughts and prayers.

                                                                   Love, Babs

Posted 5/8/2008 3:21 AM (GMT 0)
Johns Hopkins in Baltimore has great rheumys.  I am familiar with their myositis clinic but I know they have lupus specialists as well.
Posted 5/8/2008 3:35 AM (GMT 0)
Hi Bsime:

Thanks for the recommendation, is there one particular doctor that you can think of. I need someone whose really likes to put the puzzle together. Between the RA, Lupus and MDS, I really need s top notch doctor. My primary care doctor plans on speaking with who ever is going to see me. I've got a complex medical history with 7 volumes of medical records. My doctor thinks the doctor should see me a plain canvas and the new doctor should forum their own DX's on me.

My email acct should show up Bsime. Hoping to hear from you again soon.

Take care,
Barbara
Posted 5/8/2008 4:30 AM (GMT 0)
Barb: I sent you the e-mail let me know if you get it. Doc. Brent is on the board for lupus.I have doc. Jacobs she is very good also. They work in the same office.
Posted 5/8/2008 5:47 AM (GMT 0)
(((((((((( Barbara ))))))))))))) Sounds like you need to send invitations for care with a good job descript ion and see who answers!! What a great idea for you doctor to bring in some new, clear thinking for your care! I hope this gets you some good care. Keep us updated! Blessings!
Posted 5/8/2008 7:10 AM (GMT 0)
((((Barbara)))) I hope you find a good second opinion doctor and I'm glad that you are doing it and strong enough to do it. The only names I know are the usual Cleveland Clinic, Johns Hopkins, and Mayo but my experience with Mayo Jacksonville has been less that great, but I'm a hard patient, have lots of physical problems but bloodwork not obvious.

Anyway, on the liver transplant side, I heard University of Penn Medical Center is good for liver transplants, which means they are probably okay with other stuff and might be worth finding out about. I have heard good things about them from my liver forum. Take care and I hope you find someone good with the knowledge and the fight to get done what you need.

Take care. As far as cancer goes, Moffitt in Tampa, Florida is highly rated for multiple myeloma, which is a relatively rare cancer and they do a lot of stem cell transplants. My stepmom says you have to be very careful what tx they give you because chemo/radiation can mess up your stem cells. I don't know if this is true for blood cancer. I'm so glad you are doing better and taking the bull by the horns here.

(((hugs))) and I hope you find a great doc.
Posted 5/8/2008 12:49 PM (GMT 0)
Barb,

I don't have a specific doctor to recommend at Johns Hopkins for your problems.  They have a very strong rheumatology department as do places like Mayos, Cleveland Clinic and Northwestern.  The only doctors I know at JH specialize in myositis diseases and probably would not be the ones you see.

In my case I had 2 suburban (Chicago) rheumys, an internist, a hemotologist, and a 3rd rheumy from Northwestern to unravel my puzzle and treat me.  Sometimes it takes more than one to diagnose and treat these difficult diseases.  As for letting you doctor not see your past records I do NOT recommend that.  Give them every advantage of seeing all the tests and records.  When I enlisted the doctor from Northwestern I sent him about 80 pages of records.  He called for a lot more tests as well but it saves time and sometimes there is a clue in the past records that earlier doctors have overlooked.

Hope you can get answers soon.

Bill

Posted 5/8/2008 1:26 PM (GMT 0)
Barb: Bill is right my rheumy sent me to U.Penn to see a derm. this doc. also spicalizes in lupus she diagnose me with  Dermatomyositis. If you can fax some of your info. over to the rheumy that way she can look it over. Hope this helps. Debbie 
Posted 5/8/2008 9:36 PM (GMT 0)
Barb, I am praying that you find the kind of doc you are looking for. They are out there, but they can be hard to find. My thoughts and prayers are with you. Love and hugs
Posted 5/9/2008 1:57 PM (GMT 0)
Barb, I'm glad that your PCP finally recognized that you need some better doctors. I don't know of any up your way but from what I've heard, Johns Hopkins is hard to beat. I hope you find a good team of doctors that won't give up till they get some answers. Bill was successful at that so I have confidence that you will be too.

Hope you're at least having a pretty Spring!

Love,

Pat
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