Author Topic: Top Sjogren's Specialist/Rhuematologists  (Read 3800 times)

GeorgiaGirl

  • Full Member
  • ***
  • Posts: 101
Top Sjogren's Specialist/Rhuematologists
« on: November 05, 2011, 01:47:38 PM »
If money and location were not issues, what doctor or clinic would you go to?  I find it hard to get good information via internet searches.
Primary Sjogren's, Raynauld's, GERD, IBS

Plaquenil, Cymbalta, Abilify, Meloxicam, Pantoprozole, D3, Omega 3 Fish Oil, Tumeric, Iron, B complex, probiotic

40 y/o, mom of 2 busy boys

Still in the hunt

  • Guest
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #1 on: November 05, 2011, 02:19:48 PM »
John Hopkins,,,,,,
Sjogrens clinic in Philly,, (Dr. Vitino sp)
Dr. Thomas Medsger, Autoimmunity clinic, Pittsburgh
I would say Mayo,, but there go by the book and you better show signs of the syndrome,, bloodwork,, lip biopsys positive,, I spent a week out there and came away with no Dx of Sjogrens, although rheummy here says it is,, so pick one,,
Guess i;ll find out when they cut me open

GeorgiaGirl

  • Full Member
  • ***
  • Posts: 101
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #2 on: November 05, 2011, 02:58:08 PM »
I keep seeing John Hopkin's pop up. But, without hearing from someone who has actually been there, I wonder what the actual benefits would be?  Would it really be worth the time to spend 3 days in Maryland?  Could the treatment regimen be that different?  I am anti-SSB positive, so I wouldn't be going for the main purpose of receive a firm diagnosis.   

My other thought is that by going there, each additional person who has SS has their history/symptoms/complications, etc., added to the info they collect would be beneficial to Sjogren's research/treatment as a whole.  ???

Primary Sjogren's, Raynauld's, GERD, IBS

Plaquenil, Cymbalta, Abilify, Meloxicam, Pantoprozole, D3, Omega 3 Fish Oil, Tumeric, Iron, B complex, probiotic

40 y/o, mom of 2 busy boys

warmwaters

  • Hero Member
  • *****
  • Posts: 1080
  • Never, never, never  quit - Winston Churchill
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #3 on: November 05, 2011, 04:54:54 PM »
Nancy Carterton in SF. She's received many positive comments from people on the forum. I have my first appointment with her soon
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, flomax, various inhalers
Bonus vitamins:  D,B1, B6, B12, Calcium

Joe S.

  • Hero Member
  • *****
  • Posts: 6456
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD
    • Chakra Force
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #4 on: November 05, 2011, 05:14:30 PM »
I think that you may have to separate diagnosis and treatment. It took forever until I told the doctor the symptoms and asked what he thought it was. Currently I believe that most doctors are limited by the insurance companies to two or three symptoms per visit. This would make it hard for any doctor to produce an accurate diagnosis. With in 6 to 12 visits since most of their tests do not show the results until the illness has taken over.

Management of our symptoms is our current best option.

A lot of the possible tests and treatment options are not approved by the FDA like Melafind. Melafind is a device that was invented by a small company to help diagnose Melanoma. Melafind is 98% effective in the diagnosis of melanoma. The FDA did not want to consider this since it did not come from Big Pharma. With lobbying it was recently accepted.

Bits and pieces of research are found on the web in white papers and forums like this. From this forum I found out that Testosterone was low in people with Sjogren's. I added that tone to the tones for parotid glands and got relief of some of the symptoms. I use Reiki and tones for Dry Eyes to reduce the eye pain and dry mouth. I use different therapies for different symptoms. Management and control of symptoms improve our lives. Some people manage with Rx meds which is great. Some of the doctors over prescribe and we have side effects. Others under prescribe. Each one of us has a unique system and what works for one of us does not work for all of us.

Find what works for you.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve
Reiki, reflexology, meditation, electro-herbalism

Still in the hunt

  • Guest
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #5 on: November 05, 2011, 05:42:50 PM »
I keep seeing John Hopkin's pop up. But, without hearing from someone who has actually been there, I wonder what the actual benefits would be?  Would it really be worth the time to spend 3 days in Maryland?  Could the treatment regimen be that different?  I am anti-SSB positive, so I wouldn't be going for the main purpose of receive a firm diagnosis.   

My other thought is that by going there, each additional person who has SS has their history/symptoms/complications, etc., added to the info they collect would be beneficial to Sjogren's research/treatment as a whole.  ???
Like Joe said were all different,, some people get off pretty easy,, if easy is dry eyes and dry mouth,, ut to that person its horrible,, but tehre are some of us like Joe said,, make it hard to pinpoint something when we have so many areas involved and a doctor cant piece different things together, if it were stomach pain,,, they can zero in,, when we start to complain about burning skin,, trouble walking,, abdominal pain,, dry mouth dry eyes,, there is no way in heck there going ot look at us sanely,
 These autoimmune things are insidious, you go to the doctor,, he runs some basic labs,, you are normal, and we get sent on our way home,, feeling good that out liver is working ok,, but why do we feel so bad,, why does the sun hurt,, why does our skin burn,, we go back to the doctor, tell him whats going onnow,, and now we get alook like,, oh boy,, heres s hypochondriac,, if were lucky we get sent to a neuro,, if not a referral to a psych,, now we begin to  question our saniety,, or hear,, oh you have fibro,, meanwhile your nervous system is being assulted beyond repair,
  Now,, if you go to a place that sees and treats jogrens,, its very likey they have seen alll these symptoms and kmowwhere your coming from,, you can get proper testing,, EMG, MRI,,Nerve biopsy,, then you begin to be treated correctly,,, I dont think the damage is completely reversal, but it may make life more managable,, I never got that chance,, my rheummy told me I fell thrugh the cracks of the medical community,, I had nervous system problems that EMG studies didnt show,, it was small fiber neuropathy,, which has gone body wide with some motor involvement,, I have doctor notes at home here stating that the patient in his opinion has a somotoform disorder,, a psych disorder,, so then I was deemed,, in one word,, NUTS,, so nothing was done for along long time until a biopsy proved something was going on,, thats why I think if I had the resources,, I would go top notch,, you can bet the williams girl is getting alot better treatment then the average person is,, what rheummy or neuro would not love to say he or her treated Venus williams,, of course this is my own opinion on this,, take it for all its worth

Patze

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 6709
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #6 on: November 05, 2011, 05:52:37 PM »
If money and location were not issues in seeing a doctor or going to a clinic....hmmmmmm, good question.

Lets see, I'd love to see Dr. Fox, Dr. Vivino, and Dr. Carterton to name a few, and a few others that are listed on the SJS Foundation Medical & Scientific Advisory Board.

I am thankful there are several very good doctors around the country quite fluent in SJS.


Patze
Our home page  http://www.sjogrensworld.org/index.html
Live chats  http://sjogrensworld.org/chats.htm

Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

Sero Negative Queen

GeorgiaGirl

  • Full Member
  • ***
  • Posts: 101
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #7 on: November 05, 2011, 06:28:06 PM »
Many good points to be taken.  Thanks!

Thanks Patze for the advisory board suggestion.  I was at a loss as to what I should actually "google".   "Top Rheumatologists" will come up with a list with physicians that have a niche in so many different areas. 

After my ridiculous wait time yesterday at an Atlanta rheumatologist, I started researching for some else recommended who was nearby.  So why the heck not search for someone who truly understands SJS? 
Primary Sjogren's, Raynauld's, GERD, IBS

Plaquenil, Cymbalta, Abilify, Meloxicam, Pantoprozole, D3, Omega 3 Fish Oil, Tumeric, Iron, B complex, probiotic

40 y/o, mom of 2 busy boys

DragonflyC

  • Hero Member
  • *****
  • Posts: 1186
    • Sjogren's Style
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #8 on: November 06, 2011, 08:24:42 PM »
If money and location were not issues, I would see. . . my current rheum.

My first rheum was a jerk (one visit; never again), but I struck gold with the second one. He's not famous. He doesn't work for a fancy research facility. He's just an incredibly smart guy who stays up-to-date, listens to me, respects me, and takes my insurance.

There is hope for finding a local doctor who can help you, so don't give up. The suggestion of asking for recommendations (in person or online) is a really good one. You might also look for listings of speakers at Sjogren's Syndrome Foundation seminars in your area if there have been any. I heard Dr. Ann Parke speak at a SSF seminar in Hartford, CT, and I would go to her in a heartbeat if I ever had to change doctors.

Just keep at it--I know how hard it is when you are tired and sick, but the right doctor can be life changing, and you deserve good care.

Best wishes,
C.
SJS, Hashimoto's, Raynaud's
Plaquenil, Evoxac, Restasis, Levoxyl, fish oil supplements, Vitamin D, NSAIDs, prednisone when flaring
Tested positive for SS-A ( > 8 ) and ANA (>1:640)

Visit me at http://sjogrensstyle.com for ideas about living well despite autoimmune disease.

Madison Granny

  • Sr. Member
  • ****
  • Posts: 486
  • Keep on fighting and stay strong!!!
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #9 on: November 06, 2011, 09:40:32 PM »
I'm with you DrangonflyC.  I would stick with my Rheumy.  He listens and does not try to get me to take something if I don't think it will help.  And if I want to quit taking something he doesn't fuss about me not doing as he says.  A good Rheumy is hard to find especially here in Oklahoma City so when you find one you better keep going to him. 
Primary SJS, dRTA, Osteroporis, OAB, stage 3 kidney disease, hypothyroid and high blood pressure.  Medicine I take are plaquenil, bicarb, prolia, synthroid, toprol and amolipine, citracal and vitamin D.  I use Arex and Azasite and Prolia.  I also have Reynaud's and osteoarthris of the toes

jasonsmith

  • Guest
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #10 on: November 06, 2011, 10:48:16 PM »
I'm in Tennessee and still looking. But probably going to try Vanderbilt next.

warmwaters

  • Hero Member
  • *****
  • Posts: 1080
  • Never, never, never  quit - Winston Churchill
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #11 on: November 06, 2011, 11:59:49 PM »
When I was looking for a rheumy, I asked here, and encouraged folks to send me a private message, so that if they didn't want to go into too much detail publicly, they could feel more comfortable in private. I got some useful information that way.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, flomax, various inhalers
Bonus vitamins:  D,B1, B6, B12, Calcium

soycoffee

  • Sr. Member
  • ****
  • Posts: 448
  • Dry feet :-) Primary SJS
    • For My Tummy -- IBS
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #12 on: November 07, 2011, 01:20:18 AM »
If you go to the Sjögren's Syndrome Center and Rheumatology in Philadelphia, that Dr. Vivino heads, you would probably not see Dr. Vivino, unless you were willing to wait for a long time for the first appointment. There are five or six other doctors who work with Sjögren's Syndrome.

I might meet Dr. Vivino when I participate in a diagnostic study they have going; I'm scheduled for December 14th, and somewhere along the way in that process all the volunteers will have a lip biopsy. When I agreed to participate, I was asked "Will you agree to a lip biopsy?" What did I know? "Sure, I said."

To me, the Philadelphia Clinic is small, and actually shares space with Rheumatology. The literature in the waiting area does not have anything on SjS, but leaflets on RA, and MS, and other Autoimmune Diseases. On the other hand, Dr. Vivino is on the "go to " list for Sjögren's of the New York Times. If he *were* my doctor, I would probably not say all of these speculative things, or disparage the clinic.

I am glad to find a Sjögren's Syndrome clinic close to where I live, and one affiliated with a top ten Hospital, the University of Pennsylvania Medical Center. When I've really needed it, I've gotten top level care there. When there's no problem in dx, the care level falls. When I sound like a chronic complainer about my health, I either baffle my PCP, or put him to sleep. But he woke up when he heard Sjögren's syndrome, and saw it confirmed with positive ANA and positive SS-A, blood tests he had ordered from the computer cook book.

An advantage of the Penn Presbyterian Sjögren's Center is that it is now completely computerized. All of my doctors in the system get to see the results of other doctors' "views" of me, which acts as a control on individual opinions. All that said, *I* made the call that it was Sjögren's, not a doctor. Where that overall system computerization has worked best is with my eye problems. I have gone to the Scheie Eye Clinic, which has a very accessible Emergency Intake, with referrals to specialists. I've got four eye doctors involved in my care, now. All of them can read the computerized records of my visits with all the others-- and reply to each other, or note how the situation has changed.

The Sjögren's Syndrome Center has some specific rheumatologists dedicated to SjS, and a rheumatology office waiting area that probably looks like any other rheumatology practice. Behind the scenes, though, there's a lot more. Dr. Vivino has gathered specialists in Sicca syndrome (for the eye), oral and maxillofacial treatment of severe dry mouth, dentists (that I will need to see), and other doctors in specialties who have made it a practice to be aware and interested in how their area intersects with Sjögren's Syndrome. And all of them have access to that computerized system!

There is a coordinator, mostly for the research study, who can also get you started with a doctor -- either someone with the next available appt, or someone recommended by name, or possibly Dr. Vivino.

Last, but not least, there is MyPennMedicine. Through it, I have access to all my  doctors or their offices in some form or another, electronically. There's a list of all my upcoming appointments, that can be accessed by a doctor's office when I am trying to make an appointment, or by me when I am trying to remember when I have appts. Test results *usually* get posted fairly quickly, though the results of the sialography (nuclear scanning of salivary glands) are not yet on there.

So describing the SjS Center at Penn Presbyterian Medical Center (PPMC) calms my own fears for the lip biopsy. Though I don't know who will be doing it, I'm fairly sure it's someone good.


Soycoffee

Primary Sjögren's Syndrome // Gabapentin, Prednisone, Dibencozide, Methyl B12, Adenosyl B12, 5-MTHF Folate, MSM for pain, SAM-e, TMG, zinc, multimineral, D3, Benfotiamine, Melatonin, Spicy Hot V-8 Juice

anita

  • Hero Member
  • *****
  • Posts: 2045
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #13 on: November 07, 2011, 06:12:44 AM »
I've been to the Johns Hopkins Sjogren's Center.  Dr. Baer heads the rheumy dept.  If you have neuro problems, then Dr. Julius Birnbaum is the man to see.  He is at the Sjogren's Center at Hopkins also.  He is both a neurologist and rheumatologist...yes, both...the only one in the country to be both.  And devotes his practice to the neurological manifestations of Sjogren's.  He is an 'academic' doctor (research) and doesn't see that many patients.  But if you have severe neuro problems and try, you may get into to see him.  I have been a patient of his for almost 5 years now.

It's a long process to get an appt, but worth it!!

http://www.hopkinsmedicine.org/rheumatology/clinics/sjogrens-center.html
50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

GeorgiaGirl

  • Full Member
  • ***
  • Posts: 101
Re: Top Sjogren's Specialist/Rhuematologists
« Reply #14 on: November 07, 2011, 06:56:19 AM »
Thank you for all of the advice.  It really does help.

If there is anyone out there in Georgia that has found a good doctor that won't make you wait for umpteen hours in the office, please message me. 
Primary Sjogren's, Raynauld's, GERD, IBS

Plaquenil, Cymbalta, Abilify, Meloxicam, Pantoprozole, D3, Omega 3 Fish Oil, Tumeric, Iron, B complex, probiotic

40 y/o, mom of 2 busy boys