Anyone from New England?

[cinmac]

Hi, I'm from ME and wondered if there was anyone from New England out there.  I keep hearing rumors of a Sjogren's specialist in Boston-has anyone been to him?  I have been to Mass E& E but no miracles to be found there.

cinmac

[ErinG]

Hi cinmac,

I live in CT in the Hartford area.  I have only recently started seeing a rheumy, but so far she has been great.  My biggest problems have been my kidneys, so I have been seeing both the rheumy and the nephrologist every few weeks.  Both of them are affiliated with Hartford Hospital (they work for the same medical group, too). 

I haven't had to travel for treatment yet.  My kidney biopsy samples were sent to a doctor at Columbia who specializes in Sjogren's-related kidney problems.

Have you been Dx'd yet?  I know that is more than half the battle for a lot of people.  I was lucky that my ophthalmologist mentioned it a few years ago, and all my bloodtests screamed positive once I saw the rheumy.  How are you being treated currently?  I'm on 60mg prednisone, 400mg plaquenil, and I'm waiting for my insurance to approve Cellcept.

Erin

[Dolly Dimples]

  Cinmac,    It pains me to say this but.... you ain't gonna get that miracle anywhere in the world, that's  for sure!!
                                                           Soreeee,    Dolly

[Liz D.]

Hi cinmac,

I am from Massachusetts, south of Boston.  I don't necessarily know if there is a Sjogren's "specialist" in Boston, but I believe all of the major Boston hospitals (ie, Mass General, Brigham & Women's, Beth Israel Deaconess, etc.) have rheumatology departments that are advanced and know more about Sjogren's.  I tried to get treatly locally by a rheumatologist who looked at me crazy for wanting help.  I didn't get the help I needed until I went to the rheumatology department in Boston.

Liz D.

[pocahontas_1960]

Erin how did your doctor no that your kidney problems were related to the sjogren's.  I have had problems since 1980 with a disfigured kidney, causing me to be very ill for yrs and yrs before finding the problem in 1980.  Since then I have had several operations (kidney).  I go to the kidney doctor often and he knows I have sjogren's and claims he doesn't believe the two are related and has never done a biopsy.

[cinmac]

Hi to Liz D.

I saw Dr. C. Stephen Foster at Mass E&E.  I guess he is one of the world's leading specialists on auto immune disorders and he was helpful in the fact that he believed I wasn't crazy and he emphasized that SS is a systemic disorder no matter what your local doctor says.  Unfortunately there are no miracles available yet.  I am still placing a bet on stem cell in the future.  If they can grow new organs, they can grow new lacrimal glands, and I have to believe it is in our futures or I would probably jump off a bridge.

cinmac

[ErinG]

Hi Pocahontas,

I will try get everything out in the right order.  I went for a physical in November and told my GP that my ophthalmologist thought I may have Sjogren's or RA based on my chronic dry eye and dry mouth and some bloodwork he'd run.  The bloodwork I had done for my physical showed I also had renal insufficiency, so she referred me to the nephrologist as well as the rheumatologist.  My first visit with the nephrologist showed lots of calcifications in both kidneys, and at first he thought it was medullary sponge kidney.  After a lot more bloodwork, CT scans, x-rays and a 48 hour urine collection, he said I had distal RTA from the Sjogren's and stage 3 CKD.  I then had a kidney biopsy so they could really what was going on.  It showed a lot of interstitial nephritis, but not lupus (phew!).  I am going back to the nephrologist on Thursday for a 4 week follow-up since starting the prednisone.  The last time he was there he said that the doctor who evaluated my biopsy is one of the best in the country with this kind of thing, and she only sees 3-5 cases a year.  If you want I can ask that doctor's name?  I forgot to ask last time.  But he/she was definitely at Columbia med school in NY.

Feel free to message me if you have any more questions!

[Victoria05202000]

I used to be from New England.     Military Brat! I graduated from Plainville High School on the west side of Hartford.  My hubs family is from Providence RI and we visited them frequently. I miss it at times.

Pocahantos, I have to chime in on the kidney questions since that is the major thing that has happened to me and YES it is believed to be caused by Sjogrens by proven biopsy and other tests. Erin gave you some good info on what is going on with her. I would be happy to answer any questions as well. Doctors consider it rare, but I think they are learning that Sjogrens just isn't about dry eyes and mouth. We have many here that do have more severe symptoms and some that it is very mild....it is fickle and can go into remission or knock us down.

Take CAre!
Vicky

[Peanut]

Hello.. I am from central maine.. i dont know anything about the docs in Boston.. but I thought I would say that I am in maine
hope to hear from you..
*hugs*
Sam

[perry]

Hi, I'm here from Western Mass. and I'm seeking a SJ specialist.
I am thrilled with my GP and my neurologist but the Rheumy's seem to have very limited experience.  Most frustrating is the exhaustion and headaches. My first symptom was numbness on legs, the dry eyes & mouth. Rheumys keep telling me symptoms are in the wrong order so the numbness must be something else. Didn't recognize irritable bowel syndrome as related before. SSA,SSB tests have been positive for a year and other related (thankfully) diseases have been ruled out.  Just osteoarthritis and PTSD (maybe a trigger???).
At any rate, any advice on finding an experienced and current specialist anywhere in MA? 
thanks Perry

[Billydude]

Hi Cinmac.  I was born and raised in Central Maine but live now in Northern California so I can't help you.
Steve
Penut,  where in Central Maine are you from?   I grew up in Livermore Falls.

[Linda196]

Hello Perry, welcome to Sjogren's World.

Symptoms in the wrong order, are they? I didn't know there was a specific order...or even routine or "textbook" symptoms for that matter! There has been recent work showing neurological symptoms as an initial presentation of SjS...you may be able to find some useful information if you google Dr Julius Birnbaum...that's his speciality.

I can't be much help with a doctor recommendation, I'm in eastern Canada.

[perry]

Linda, thank you, I suddenly feel so much less alone. 
This is such an abstract disease. I just wish denial would work. It's so hard for friends and family to understand when I dont.