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Finding the best Rheumy in the US

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Posted 10/17/2011 12:55 AM (GMT 0)
I want to take my wife somewhere else. I don't care where. I've scoured the internet trying to find Rheumys or hospitals known for their lupus care. I live in Mich and have what I thought was a good one but now I want to see someone else. We went to the U of M which is highly regarded but had a very bad experience there and one my wife won't go back. It's time to see someone else.
Posted 10/17/2011 9:12 PM (GMT 0)
Is there a mayo clinic in the area? I've heard they're the one to go to.
Posted 10/18/2011 1:11 AM (GMT 0)
I'm interested to hear that about U of M because I was going to go there.  I got the name of a rheumy in Ann Arbor, not at the U, but supposedly is a very good doc according to my chiropractor.  I'm new to the forum, are we allowed to share doctors names on here?
Posted 10/18/2011 3:03 AM (GMT 0)
There are very good rheumies at Northwestern U and Cleveland Clinic. Northwestern is a leading research institution for lupus.
Dr and Dr are both highly respected at Northwestern. Dr at Rush is very experienced with lupus and works closely with LFAI.

You might need a referral to see these doctors but worth a call.

Bill

Post Edited By Moderator (Lynnwood) : 11/11/2011 8:06:49 PM (GMT-7)

Posted 10/19/2011 12:10 AM (GMT 0)
Thank you Joy and Bill for the suggestions. I've read about a lot of the research Northwestern does. That would be the closest for me. We actually talked to our Rheumy. We were afraid we would offend her but she seemed fine and recommended Mayo or Cleveland Clinic. I live in Western Michigan so it seems CC would be closer but my wife wants Mayo.

As for the U of M... They have a dedicated Lupus Clinic supposedly but when we went there it just seemed like typical Rheumy in the hospital. He seemed rushed, didn't listen to us carefully, didn't speak very good English. He kept saying, "you might have typhoid". Typhoid??? I didn't know much about typhoid but read later main symptoms are diarrhea and abdominal pain, about the only symptoms she didn't have. He ordered all this lab work then forgot to order the one for typhoid. When we got his report, it was completely wrong. Not impressed at all and was incredibly disappointed. I'm a Michigan State fan so I guess I should of expected U of M to be way overrated.
Posted 10/19/2011 12:15 AM (GMT 0)

Bsime said...
Dr at Rush is very experienced with lupus and works closely with LFAI.

You might need a referral to see these doctors but worth a call.

Bill




Bill, what is Rush? A hospital at NU?

Post Edited By Moderator (Lynnwood) : 11/11/2011 8:07:17 PM (GMT-7)

Posted 10/19/2011 2:08 AM (GMT 0)
Rush University Medical Center is one of several large teaching hospitals in Chicago. Northwestern is another.


http://www.rush.edu/

Bill

Post Edited By Moderator (Lynnwood) : 11/11/2011 8:07:29 PM (GMT-7)

Posted 10/25/2011 10:05 PM (GMT 0)

Bsime said...
There are very good rheumies at Northwestern U and Cleveland Clinic. Northwestern is a leading research institution for lupus.
Dr are both highly respected at Northwestern. Dr at Rush is very experienced with lupus and works closely with LFAI.

You might need a referral to see these doctors but worth a call.

Bill

I see Dr. at Rush and he is awesome! I highly recommend him. At Northwestern they are doing stem cell trials for severe lupus (my neighbor is a nurse working on this program there, but I don't know the names of the doctors in the program). Dr. is big into lupus research and he has the best bedside manner. I love him!

Post Edited By Moderator (Lynnwood) : 11/11/2011 8:08:09 PM (GMT-7)

Posted 10/26/2011 4:51 AM (GMT 0)
I'm pretty sure I have the best rheumy in the country. (I'm in Spokane, WA.) I absolutely LOVE him and his team! (He has a great PA and works closely with a naturopath.) Everyone else in the medical community highly respects him and calls him "The Dr. House of rheumatology."

His name is Dr. , and he works at Arthritis Northwest.

Yes, I realize I am no where near Michigan, but I love having the chance to brag on my rheumy!

Post Edited By Moderator (Lynnwood) : 11/11/2011 8:08:23 PM (GMT-7)

Posted 10/27/2011 9:38 AM (GMT 0)
Lol. It's great you guys like your Rheumy. I'd like my wife to go see Dr. but she dead set on going to Mayo. I heard they aren't taking new patients but our Rheumy called and we are going Dec 21 on kind of a stanbye/ fill in status. I'm dreading the drive there in late Dec and terrified this is going to be another U of Mich fiasco.

Post Edited By Moderator (Lynnwood) : 11/11/2011 8:08:35 PM (GMT-7)

Posted 11/11/2011 4:37 PM (GMT 0)
Hello, I too am in search of a great rheumatologist, live in western Michigan and am a Spartan alumni. Two years ago, I saw a rheumy named at U of M and had a horrible experience (should have known better). I was referred to in East Lansing by my PCP, and she was able to diagnose me with UCTD & Fibro. I am taking Plaquenil & tramadol now, but my symptoms continue to worsen. I am going to the Cleveland Clinic next week to see Dr. in the rheumatology & immunology dept. Hoping to get a final diagnosis & start some more aggressive treatment. I can report back on my experience at the Cleveland Clinic if you would like. I have considered Mayo as well, but my PCP thinks C.C. is equally well regarded. When I called the Mayo Clinic in MN a few months ago to see about scheduling an appointment, I was told that the rheumatology department is not accepting any new patients and has not for over two years. This may have been because I was trying to make a self referral. Also, I have read online that the "best" rheumatologist in the nation is Dr. at the Lupus Center at John Hopkins (hopkinslupus.org). I imagine it is difficult to get in to see her.

Post Edited By Moderator (Lynnwood) : 11/11/2011 8:09:07 PM (GMT-7)

Posted 11/12/2011 2:31 AM (GMT 0)
Dr. is the same Rheumy we saw at U of M and he was terrible. U of M must have better Rheumys than that! Shame both of us didn't get a better one because it would of saved us a ton of trouble (and money). I like our current Rheumy in Grand Rapids but we need another opinion as my wife just isn't getting better. I would be very interested to hear about your CC trip. I really hope it goes well and you get some help. Please keep me updated.

Post Edited By Moderator (Lynnwood) : 11/11/2011 8:09:21 PM (GMT-7)

Posted 11/12/2011 3:05 AM (GMT 0)
I'm sorry, but we cannot mention the names of specific doctors on this forum for legal reasons. You can put your email in your profile and email each others about doctors, but they shouldn't be named individually on the forum.

I've edited out the names in this thread, and have to ask you to respect the web owners wishes in this regard.

Thanks so much for your understanding,
Posted 11/12/2011 9:16 PM (GMT 0)
At Casey Eye Institute, which is apart of OHSU (Oregon Health and Sciences University) (a teaching hospital) there is a very good rheumy, mine hehe. He's actually one of the world renown doctors as well. Um since I can't list his name... the site to the hospital is www.ohsu.com and there is a doctor finder on the right side. I can tell you last name starts with R. If you look at all the doctors it gives pictures of them too.... short, going bald, like prob 60s age, glasses, white desent, degree recieved from Yale in 1975. Specialities is Rheumatology, Allergy & Immunology, Ophthalmology also treats Uveitis and Ocular Immunology, Ophthalmology, Immunology / Rheumatology, Arthritis & Rheumatic Diseases

*tip toes away from lynnwood*
Posted 9/9/2013 10:24 PM (GMT 0)
Hey Guys! I am also trying to find a good Rheumy in the Missouri area. I have been on this journey for 2 years now and was just dumped by my 20th Orthopedic doc.
I keep getting told that I should see Orthos and Oncologists. They found a tumor in my femur and won't let it go. Which is weird to me considering that none of them will biopsy the thing.
I have every symptom of Lupus(along with a very pronounced butterfly rash), leaning toward NPSLE.
I have upwards of 20 panic attacks a day, forget that I have the brain function of a Caveman most days, along with crippling spine pain.
but I digress.
The last doctor that I saw was the head of orthopedics at Washington University in St. Louis. He went over my films and tests and had me walk for him. After the exam he said that my doctor had wasted his time sending me there. Before he left the room he told me to go back home and focus on Lupus. You would that since I had made the 400 mile trip that he could refer me to his pals that were literally steps away, but no. He said that it was out of his scope, a term that I am all too familiar with, meaning I really don't want to put forth the minimal effort to save your life. By the way "It's out of my scope" is going to be the title of my book. Chronicalling the assanine journey that I have had to endure
I 've blabbered on enough. If anyone knows of any in Mo it would be greatly appreciated
Posted 9/10/2013 3:02 AM (GMT 0)
Hi sorry that you're having to deal with such issues. 2 years is a long time, but some of us have gone a lot longer I'm sorry say. It took my Doctor's 13 years before they would formally say and start to treat my lupus. I truly believe that's partly why I'm so sick now.

If you go to www.lupus.org they will have a list of Doctor's in the states that you could call. I'm not sure what type of insurance you have and if you need a referral or not. You could get the names from the lupus foundation and take them with you if you need a referral. Show the list to your GP or PCM and I'm sure they will help you get into see one.

I would also recommend that you see an oncologist about the tumor in your femur. If the Orthopedic Doctor's won't biopsy it, then I think you need an oncologist backing you. Just my opinion, I have leukemia and a mass in both of my lungs. My Doctor's aren't sure whether the mass in my lungs are cancerous or not, but they requested I have a PET/CT scan done. Possibly a biopsy or total removal of the masses if need be.

This is a really old thread and the folks that started no longer respond to it. If you'd like you could start a new post and introduce yourself and give us a bit more information about your symptoms, tests that have been done, you know all that stuff.

Again, welcome but sorry that your sick with possibly lupus. Lots of great folks here with loads of experience. Good luck and please come back and let us know what happens.

Hugs,
Barbara
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