Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl
General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> Dr. Marianna Castells in Boston
http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1293813169

Message started by Riverwn on 12/31/10 at 04:32:49

Title: Dr. Marianna Castells in Boston
Post by Riverwn on 12/31/10 at 04:32:49

(Archived from deborahw - original forum)
deborahw
Dr. Castells is a leading mast cell researcher in Boston. Like Dr. Akin, she is known for her compassion and willingness to help mast cell patients. For east coast patients, she is a a great doctor to go to! I don't know how easy it is to get a quick appointment with her, but once you go, you won't be disappointed!
__________________
Feel well!
Deborah
19 March 2009 07:23 AM

Title: Re: Dr. Marianna Castells in Boston
Post by Riverwn on 12/31/10 at 04:34:36

(Archived from starflower - original forum)
starflower
I know a couple of people in this group have seen Dr. Castells... what was it like?  Is there anything I should know to make the appointment more successful?  I'm thinking of going, but it's a long trip for me... and I've been disappointed by doctors SO MANY TIMES.  Ugh.  I'm assuming I should take as much of my medical file as I can get... I've ruled out a lot things in the last year.    
__________________
Through the years I have learned
Some things worth the tellin'
And you'd be right in guessin'
That each and every lesson... they were hard won.
10 September 2009 07:49 AM

Title: Re: Dr. Marianna Castells in Boston
Post by Riverwn on 12/31/10 at 04:36:04

(Archived from thefoxx - original forum)
thefoxx

Star - it's like visiting the Dali Lama.  It was wonderful.  Prior to my visit I sent her an email stating I was coming to see her for masto - that I had my tryptase level, n-methyl histamine levels and bone marrow biopsy.  I asked her what other tests she'd like to see for my visit.  She asked me to get a CT scan, bone scan, skin punch and a few other things that I had my regular doctor order and was able to do locally (to be sure insurance covered it).

I got into Boston the night before so I didn't have to worry about any travel issues (which was good because my flight was severely delayed).  I just wandered around Boston till it was time for my appointment.  VERY IMPORTANT - she is NOT in Boston - she's in a suburb - about a 10 minute taxi from downtown Boston.

The appointment started in her office going over my tests, then into an exam room for a physical check and then back into her office.  Be prepared to take notes as she goes over a lot of information.  I brought my husband along for backup ears and brain :)

Go - it will give you a lot of peace of mind.  I know it did for me.
10 September 2009 08:33 AM

Title: Re: Dr. Marianna Castells in Boston
Post by Riverwn on 12/31/10 at 04:37:45

(Archived from starflower - original forum)
starflower

That sounds very smart... how did you get in touch with her?  I looked up her profile at Brigham Women's Hospital, but I didn't see an e-mail address.

Also, how long was your appointment?  Did you have to do anything special to make sure you would have enough time together?
__________________
Through the years I have learned
Some things worth the tellin'
And you'd be right in guessin'
That each and every lesson... they were hard won.
10 September 2009 10:31 AM

Title: Re: Dr. Marianna Castells in Boston
Post by Riverwn on 12/31/10 at 04:45:39

(Archived from thefoxx - original forum)
thefoxx

Hmmm - it used to be on her profile.  Her email is mcastells@partners.org.

The appointment was about 45 minutes long.  All I did was first register with Brigham and Young as a patient (her office will explain how to do that).  Then you call the office for the appointment and tell them that you are a masto patient and they take it from there.
10 September 2009 01:42 PM

Title: Re: Dr. Marianna Castells in Boston
Post by Riverwn on 12/31/10 at 04:46:53

(Archived from deborahw - original forum)
deborahw
I should have all her contact info. I will check and see.
__________________
Feel well!
Deborah
10 September 2009 01:42 PM

Title: Re: Dr. Marianna Castells in Boston
Post by Riverwn on 12/31/10 at 04:48:14

(Archived from rnonc - original forum)
rnonc

I have an appointment with Dr Casstells in November. I am looking forward to it.  It takes quite awhile to get a new patient appointment with her but office is very responsive and supportive.
They set me up an appointment with  Dr Greenburger at Brigham and Womens 3 weeks ago. He is a Gi Doc that specializes in Masto.  All I can say is that thank the lord for Dr Greenburger. He is incredible. I have heard it said that if you have Mastocytosis and you go see a masto specailist they can tell with in a few minutes.
I was sceptical after PCP, Oncologist, Hematologists, Endocronologists, and many others were all puzzled by my symptoms.  Differental for carcinoid did not pan out other than elevated prostoglandins most Dr's thought Mastocytosis ruled out but Dr Greenburger had the expertise and understanding to sift through  the mountain of test results, Ct's MRI's, Bone marrow, Octreoscans and see Mast cell activation disorder.
It was refreshing to see a Dr who was compassionate, knowlagable, and did not think I was suffering from some psych disorder. The first thing he asked my wife was " is he always this color?"  (I cant tell you how many Dr's have told me how healthy I look because of the nice red glow in my cheeks.) I knew when that question was  asked that after a long journey my wife and I had finally walked into the right office.
I have started treatment H1, H2 blockers and Cromolyn sodium . I am Better. WOW. Still have had a number of flushing episodes, still cramping , and brain fog but it is changing not as frequent except for 1 episode they seem less intense. All good news. I have capselle endoscopy tomorrow just to finish my work up for carcinoid.  But it looks like we have found the cause and that feels great.
I will see Dr Castells next month and hope to continue with Dr Greenburger.  The team at Brigham and Women's hospitalis great. Everyone from the parking attendant to the receptionist was proffesional and courteous.  If like me you have been lost in a world of clinics Dr's and testing with no answers and your symptoms are similar to those of Masto I highly recomend trying to see someone from the team at Brigham and Women's hospital in Boston. It is very clear to me now that most physicians even specialists are not equipped to deal with this diagnosis.
09 September 2010 07:22 AM

Title: Re: Dr. Marianna Castells in Boston
Post by Stacy on 01/29/11 at 11:36:11

Dr castells is wonderful!  I brought my 20 month old so to see her in december  Yes, it took a long time to get into see her, but it was worth it.

She discussed my sons case w/his allergist months before we saw her and gave him recommended doses on gastrocrom.  

I had to call the office the other day to check on one med that he gets when his eyes are dialated, the office is so responsive.  They called to tell me that they got my message and they were sending the info off to dr castells, next am, I had a call back.

I would recommend seeing dr castells, we were already on the right track w/my son.  she gave me her emergency plan, some mastocytosis info and brochures.  we did up his gastrocrom from 1 vial to 2, but that was the only change.  we are going to follow up w/her on an annual basis unless something arises.

Title: Re: Dr. Marianna Castells in Boston
Post by nevermiss on 02/04/11 at 14:40:46

I am lucky to live in Boston.  I have seen Dr. Castells and Dr. Akin.  They both are great.  I also have Colitis.  I just saw a young GI doctor, Dr. Hamilton at Brigham and Women's.
One of his special interests is Mast Cell disease in the GI tract.  He spent almost an hour with me and asked me to keep him posted via email how I am feeling.  It was great to find another GREAT  Doc at the Brigham's.

Title: Re: Dr. Marianna Castells in Boston
Post by nycpots on 02/04/11 at 15:17:58

I just sent you a private message - I would love to hear back from you if / when you get a chance. Thank you!

Title: Re: Dr. Marianna Castells in Boston
Post by sandy on 02/17/11 at 11:59:05

2 1/2 years ago being diagnosed with UP I am finally making my journey to Boston to see Dr. Castells next week. I have been emailing her periodically and she has giving my local docs med suggestions up until this point. I finally just asked her yesterday to see me and she agreed. I was surprised to get a date so soon so I am unprepared. I live in Delaware and plan on driving up the night before. Can anyone that has been there give me any tips -ie a near by hotel, parking info etc? I got a new patient packet faxed over today. I am excited to finally have someone that can help me instead of looking at me like I am crazy or have ten heads

Title: Re: Dr. Marianna Castells in Boston
Post by nevermiss on 02/17/11 at 15:04:15

Hello.  I live in Boston.  The best hotel closest to Brighams is the Hotel Commonwealth.  There are a few closer but this one is the best.
As far as parking, there is valet parking at Brighams.  It is easy.
The are is home to a few other hospitals(Beth Israel and Children's Hospital) and a few colleges.  It is a very busy area.

Title: Re: Dr. Marianna Castells in Boston
Post by nycpots on 02/17/11 at 15:39:20

Hi there - If your looking for another option - I was just there last week for my first appt with Dr. Castells. We stayed at the Courtyard Marriott in Brookline (the one on Webster St). If you have AAA it's much cheaper - and it's also cheaper to book online. Parking is extra (about $24 for 24 hours). It's a short drive to Dr. Castells' office. The rooms are large, clean, etc. and you are in the middle of the town of Brookline where there is a Trader Joe's, a bunch of restaurants etc. Hope that helps! :)  

Title: Re: Dr. Marianna Castells in Boston
Post by Stacy on 02/20/11 at 08:00:01

Dr Castells office is not at Brigham and Woman's it's on RT 9 in Newton, MA.   It's in "Chestnut Hill"  There are many hotels in the area, depends on what type you are lookng for.  

Just as an FYI...the building does come up on you rather quickly and it's a quick/sharp turn to get into the driveway.  I had a GPS, so that helped.  It was all valet parking, which I didn't realize, thankfully I had a few $$ for a tip.

NYCpots, did you see dr castells in chesnut hill or someplace else??   my understanding was she was only at the allergy center at the medical building in chestnut hill.   They told me thats where she was...they being the person that set my appt and the person who went over the paperwork that had to be reviewed prior to making appt.

Title: Re: Dr. Marianna Castells in Boston
Post by nevermiss on 02/20/11 at 11:12:38

It is best to check with Dr. Castell's office since she sees patients
at Brighams and at the office in Chestnut Hill.

Title: Re: Dr. Marianna Castells in Boston
Post by manuella on 02/23/11 at 11:42:18

Hi everyone, I also travelled to see Dr. Castells once in the summer of '08.  I stayed at the Best Western Inn at Longwood which is very close to the Brigham and Women's Hospital.  My appointment was out at the Chestnut Hill location and a wonderful person with masto who lives in Boston volunteered to take me there which was such a bonus for me as I had travelled across the continent on my own and was full of apprehension.  

Just wanted to mention that if you are travelling to see a specialist who works out of Brigham and Women's, you can ask for a list of participating hotels from the person organizing your appointment at the Hospital and they will send you a confirmation of your appointment that you can present to the hotel desk and this will qualify you for a discounted rate.  At least that's how it was in 2008 so I assume they may still be offering this.  The hotels are expensive there so any little break in price helps.

Title: Re: Dr. Marianna Castells in Boston
Post by sandyb on 03/10/11 at 13:14:23


Thanks to all for your suggestions. I cant tell you how much I rely on and appreciate everyone's support. I am glad I finally made the journey to see Dr. Castells and feel that I am now on the path to feeling better. I still have some more results to go over with her and a new medication regime to get used to but I will keep you posted on anything that I can share with you

Sandy  

Title: Re: Dr. Marianna Castells in Boston
Post by JamieArcangel on 03/11/11 at 13:23:02

Hi all !

 I am new to the board and need some quick help. Iam in need of Dr Castells personal email address.

I am a new patient of Dr Castells, I saw her for the first time about 3 weeks ago. After my visit, my local doctors never received a report from Dr Castells or doctors notes so, they won't move forward with my treatment  :(


 I have been trying since Monday to get in touch with Dr Castells via the office number.  I have left about 7 messages on the nurses line and no return phone call.  I finally called the reception desk and told her what was going on.  She looked in my file and said, in a shocked voice, that there was no doctors report or notes from Dr. Castells. This is shocking to me and worrying. I guess it explains why I haven't received a call back, they don't remember who I am !!
 I was so upset I cried all day. I was depending so much on this Dr to help me.  I feel so lost now. I was already a little worried because she never read my file prior to the appointment but I figured she was really busy and gave her a pass for that.  But now, I dont know what to think. I am desperate to get in touch with Dr Castells.
I have severe angioedema as a main symptom which, subsequently causes severe edema.  I have gained 100 pounds since August !!  I am currently now gaining  around 3-4 pounds a day because Dr Castells put me on a liquid diet to help the Mast Cells in the tummy. My local doctors won't do anything about the out of control edema until they get the OK from Dr. Castells. I am not sure why. It's so frustrating and scary. The effect this weight has on my body is frightening.
If anyone has Dr Castells email and could PM me, I would so very much appreciate it !!

xoxo Jamie and Sable ( my doggie who is resting her head on my arm as I type  :) )

Title: Re: Dr. Marianna Castells in Boston
Post by Joan on 03/11/11 at 19:00:45

You might want to PM Debbie and ask for Dr. Castells email.  I think the policy is to get contact info that way, rather than posting it on the forum.  Dr. Castells will surely remember you, and maybe her notes from your visit are still on her desk.

Title: Re: Dr. Marianna Castells in Boston
Post by Sandi on 03/12/11 at 14:13:15

Jamie! Those dumbo doctors should have contacted Dr Castells office ASAP, doctors can get a hold of doctors instantly any time.! I hate it when docs drop their own ball!! I hope you've heard something by now!
Do you have a receipt when you saw her, scan it and fax it or email along with your information and response needed asap!

Title: Re: Dr. Marianna Castells in Boston
Post by JamieArcangel on 03/15/11 at 08:14:15

I just got off the phone with Dr Castells !! I am so happy !! She is going to switch me to all IV meds and tell my local docs IV LASIX in the hospital to get this water weight off is OK by her !!  Yea !! I will really celebrate when this weight is off and then I can start to address the rest of this illness.

Thanks for the advice everyone !!

xoxo Jamie and Sable :-*

Title: Re: Dr. Marianna Castells in Boston
Post by Lisa on 03/15/11 at 08:37:42

Great news Jamie!!!   That's really great to hear!!!

I hope it all goes really well!!

Lisa

Title: Re: Dr. Marianna Castells in Boston
Post by seaglefire on 07/07/13 at 03:20:25

Does anyone know if you have to have a referral from another physician to see Dr. Castells? Also, do you know how long the wait is to get in?? Thanks so much in advance!

Title: Re: Dr. Marianna Castells in Boston
Post by nikweth on 03/26/15 at 07:34:53

I was dx with IA/MCAS by the Mayo Clinic in 2011 however have been battling this for about 18 years.  My twitchy periods have been greatly reduced since an official dx primarily through medication revisions and lifestyle changes.  I've never been to Dr. Castells however wonder if you already have a dx and a fairly good regime, is it worth going to see her. My local allergist is fabulous however I don't know they she always has the latest info coming her way regarding MCAS.  I have a 17 year old son that is start to show similar manifestations of the MCAS such as hives after an infection (this is my big trigger for anaphylaxis), chest pains, extreme fatigue, digestive issues, etc.  Also, I see Dr. Theoharides has some natural items such as Nueroprotek that he promotes.  Does anyone have experience with Dr. Theoharides, know how he interacts with Brigham Young doctors or know anything about his supplements?

Title: Re: Dr. Marianna Castells in Boston
Post by sarahkay1111 on 03/26/15 at 11:44:10

Hi,
I'm so sorry your son is showing symptoms, and I hope he gets better, and does not have this disease. I ordered NeuroProtek, but haven't tried it yet (anaphylaxis from food and meds, and I have been working on other things).  The Low Histamine Chef website has information on NeuroProtek, and she is friends with Dr. Theoharides, so if you search her site, you will probably find some good information. Good luck with everything!

Mast Cell Disorders Forum » Powered by YaBB 2.3.1!
YaBB © 2000-2009. All Rights Reserved.