Has anyone gone to Dr. Shur at Brigham & Women's Boston?

[wciarci]

I just made an appointment as Dr. Komaroff isn't seeing anyone. Has anyone seen this doctor? How should I prepare? Thanks

Wendy

 

[dsdmom]

Hi Wendy,
I was unaware of any other dr's at BWH that had any knowledge of CFS, other than Komaroff. I will be very interested to hear how your appt goes. When is it? And is he/she just an internal/primary care?

 

[FernRhizome]

Has Komaroff stopped seeing patients completely? Or just not taking new patients?

 

[wciarci]

I was told he is concentrating on research and not taking patients. Dr.Schur is a rheumatologist, we'll see. I have gone to B&W before I was diagnosed, when my doctor thought I had addisons disease (hyperpigmentation, wicked salt cravings-I would eat it out of my hand). I went to an endocrinologist who was completely baffled by my symptoms. She said that she would have bet her year's wages that I had addisons, but the timed cortisol tests showed that I did not.

 

[wciarci]

oops

My appointment is in the middle of March.

 

[Rrrr]

Hi Wciari,

I need a rheumatologist and would love to hear how it goes with Dr. Schur.

Best,
Rrrr

 

[IntuneJune]

I was the first patient my rheumatologist diagnosed with fibromyalgia...... and now..... she no longer treats FMS patients. The reason: There is nothing I can do for them."

I was diagnosed 30 years ago!!!!!!

Yes, please keep us informed how the appointment went.

Thanks, June

 

[wciarci]

Hi June and Rrrr (love the tag), I will post my experiences once I have met him. I am a bit jaded by now but every once and a while I try a new doctor. I'll know in 5 minutes if it is worth my time, but I think we all would;-) Right now I am having a lot of OBGYN issues and go for a biopsy on Wednesday. If I had a dollar for every doctor's appointment......

 

[Rrrr]

i hear you! (re: dollar for every doc appt)

i did see dr. kantrowitz in brookline recently. he has a lot of experience with FM, and two of my CFS/FM friends like him. a lot. in part because he does not discount FM. i did not like him. he did not help me at all. and talked about history (his passion) for half our visit. my lord! doesn't he know how hard it is for me to get to his office? and to waste my time with a lecture on presidential history? but i'll go to him again this month. oh well.

rrrr

 

[Rrrr]

p.s. what is a tag???????

and how do i let this thread know that i want to be informed when you (wciarci) post again?

warmly
rrrr

 

[wciarci]

A tag is like an avatar only written, I think it comes from graffiti artists. I think you can go to your profile and check your posts. I am not sure about red flagging the thread though. I am very new here. Sorry.

Wendy

 

[IntuneJune]

Tag evidently is your name, Rrrr.

To be notified, scroll back to the top of this thread, at the top of the thread (not the top of the page) click "thread tools", "subscribe" then answer the questions. You have choices, one being notified by email.... however you will be notified every time a poster posts, not just one individual poster.

My husband has been driving me around since I had foot surgery two weeks ago Monday. Besides appointments for my foot, we go to Boston (from Southern Rhode Island) Tuesday, Friday he drove me to my infusion, Wednesday, back to the foot doctor.... Yes a dollar for each visit would be nice. Our social life, getting together with immune deficieny patients, or folks with celiac disease.

June


Ohhh Wendy and I were posting almost at the same time.

 

[wciarci]

Thanks Rrrr, done!

 

[floydguy]

I was told he is concentrating on research and not taking patients. Dr.Schur is a rheumatologist, we'll see. I have gone to B&W before I was diagnosed, when my doctor thought I had addisons disease (hyperpigmentation, wicked salt cravings-I would eat it out of my hand). I went to an endocrinologist who was completely baffled by my symptoms. She said that she would have bet her year's wages that I had addisons, but the timed cortisol tests showed that I did not.

Is anyone still in touch with Komaroff's office? I saw him several times but stopped as he wasn't doing any treatments for me, only collecting data for his research. I've stopped receiving updates as to his work. Not really interested in seeing him but am curious as to what his thoughts are. Has anyone gotten an update recently?

 

[dsdmom]

I believe he will be speaking @ Milton Hospital April 24th...I think it will be interesting to hear what his thoughts are.

http://www.masscfids.org/news-a-events/2/214

 

[wciarci]

I had to cancel the appointment and will reschedule when I feel better. I just can't do the drive to Boston right now.

Wendy

 

[andreamarie]

I think I saw him. Have to check name. Obnoxious. My sleep specialist sent me to him re fatigue. Had no interest in CFS, told me to load up on caffeine (I have a bladder and esophageal disease) was showing off for resident. Suggested I have a rare autoimmune disease from looking at finger. I told him that was a "little precious." The doctor I saw is the son of another famous doctor, the one who treated Sigmund Freud. I'll check it out. If you're looking for a rhueumi interested in fms and cfs, I'd recommend Dr. Wm. Pachas at MGH. I'll post phone no.

 

[lostinthedesert]

memories...

Dr Kantrowitz diagnosed me with fibro back in the 80s. He treated my mom for RA. Dr Pachas treated me when i was in spaulding after back surgery in 96 - he helped but was not treating me for Cfs. I never found any major help in boston. Mostly was told i was crazy. Best of luck with the new doc. S

 

[wciarci]

Yeah, Boston has not been of any real help in the past. I think I'll just wait it out. If I come face to face with another a..hole there is no telling what might happen, except that I would be the one arrested. I'll just wait it out. Ironic that we are blamed for getting aggressive or defensive about the whole XMRV thing when we have to deal with these doctor jerks. I need to shut up now.

Wendy

 

[andreamarie]

I was never told I was crazy. But by the time I got CFS I "knew the waterfront" re doctors. I went to see Dr. Michael Worthington, head of i.d. at St. Elizabeth's. I'd known him for over thirty yrs. I met him when I was twenty two and he was my intern at MGH. I was hospitalized because I was having a massive hemorrage from Crohn's. He helped me find the doctor who dx interstitial cystitis. I'd stayed in touch over the yrs. He didn't know much about CFS, but accepted it and referred me to a doc who was great at the time. The rheumatologist I'd been seeing for yrs for Sjogren's had dx'd me with fibro twenty yrs before and also accepted CFS.

I did have my share of being told I was crazy though. First with the Crohn's; you can't imagine the mythology built around that disease yrs ago. Trust me, it makes the CFS stuff seem minimal. And then with the interstitial cystistis. Ironically, the doctor who kept me going through all the nonsense being thrown at me was the psychiatrist I was seeing. He taught me how to use the Harvard Medical School library and how to navigate the "doctor system." I learned from him "never to be a victim." On occasion I'd call a particular doc and always got an apology.