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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> New York Area, Doctor Found http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1343268636 Message started by mommy2seanp on 07/25/12 at 15:10:36

Title: New York Area, Doctor Found
Post by mommy2seanp on 07/25/12 at 15:10:36

Hi Everyone,

I wanted to share with you a new doctor we've recently seen who is knowledgable about MCAS. Her name is Dr. Anne Maitland
http://www.drannemaitland.net/

She's caring, compassionate, and most importantly willing to help you.

My son and I have MCAS in addition to Ehlers Danlos Syndrome (EDS). To our pleasant surprise, Dr. Maitland knows of EDS too! She recently organized a group of NYC doctors in addition to an NIH doctor and is applying for a grant to research the connection between EDS and MCAS.

I will keep you posted on the research initiative.

Good Luck!
Tina

Title: Re: New York Area, Doctor Found
Post by kimtg68 on 07/26/12 at 02:04:27

Awesome resource. Thank you for posting this.

Title: Re: New York Area, Doctor Found
Post by hb36 on 07/27/12 at 13:00:37

That's great news, Tina. Thanks for letting us know. I would love to see some research on the EDS/MCAS connection :) I hope her grant comes through. Dr. Maitland sounds awesome!
Heather

Title: Re: New York Area, Doctor Found
Post by Emilyviolet on 08/23/12 at 07:13:48

I just called to set up an appt and I asked if she new about mast cell activation disorder and if they could help me and the girl went to talk to Dr maitland and came back and told me no that she is not that familar with it. so i guess im going to boston

Title: Re: New York Area, Doctor Found
Post by Joan on 08/23/12 at 09:42:08

Something isn't right here. "mommy2seanp" said she does know about MCAS, and they are seeing her for it. Maybe the person with whom you spoke asked someone else instead of Dr. Maitland. I would private message "mommy2seanp" and ask her what she thinks the problem could be. You can always call Dr. Maitland's office and ask her nurse or ask them to have the doctor call you. Of course, Boston is always a good choice, but if there's someone local, it might be worth pursuing further.

Title: Re: New York Area, Doctor Found
Post by mommy2seanp on 08/23/12 at 10:24:47

Sorry you received that information from her office staff but it is incorrect. I will make sure to let Dr. M aware of the mis information.

Dr. Maitland most definitely knows about Mast Cells and is actually in the process of applying for a grant to begin researching the correlation between EDS and MCAS. I know for a fact that Dr. M is out on vacation so "whoever" they spoke with was not Dr. M.

I'm all for going to see Dr. Castells if you can. My son sees her and I can't say enough wonderful things. But, if you'd like someone more local to get you started on treatment Dr. Maitland is a good choice and will work with Dr. Castells when you get in to see her.

Title: Re: New York Area, Doctor Found
Post by Emilyviolet on 08/23/12 at 15:47:44

hello thanks , yea when she told me that i sunk into my seat cause i was looking forward to seeing her, what office did you go to? there is 2 and the first office i called was in the city and they told me to call the other office where she was at and they would know more info which is when they informed me that, if you say she knows then i will travel to see her cause the boston doc has a year wait

Title: Re: New York Area, Doctor Found
Post by Emilyviolet on 08/23/12 at 17:10:00

im just going to make an appt with her then, and not even bother asking the receptionists but which office do you go to? i dont have mastcytosis but possible mcad. thanks again

Title: Re: New York Area, Doctor Found
Post by mommy2seanp on 08/23/12 at 18:00:29

Tarrytown but she's also opening a new office in Eastchester.

Title: Re: New York Area, Doctor Found
Post by cecil139 on 03/11/14 at 10:19:12

Thanks so much for recommending Dr Maitlin, she is terrific! She is very knowledgeable on mast cell disorders. I have been waiting for 6 mo for Dr Akin at Women's and Brighams to see me, and now I don't have to wait. I have spent 20 years going from dr to dr, only to be passed on like a hot potato, never getting any answers. It was so wonderful to finally find out what is wrong with me!

Title: Re: New York Area, Doctor Found
Post by mountain girl on 06/21/14 at 12:54:38

Dr. Maitland is a good doctor for any of us to see. Here is some information on her as well as links to her video lecture on MCAS and EDS...scroll down a bit.

http://mastcellblog.wordpress.com/2013/11/24/mcadeds/

I just recently got an appointment with Dr. Castells...it is currently a six month wait.

Title: Re: New York Area, Doctor Found
Post by PJP123 on 01/06/15 at 13:25:21

I just saw Dr. Anne Maitland today!!!! Made the appt. last Sept. or so.

She is so knowledgeable and kind. 15 doctors later and I am finally going to get some meds.

She will get my rheumatologist (who has a mastocytosis patient) to be my go to doctor at home.

She will educate him on mast cell activation syndrome, since he is one of the many doctors that are only aware of mastocytosis.

I was evaluated for Ehler Danlos (I said I thought I had this) and was told 8 out of 10 Beighton Scale. I'm not that bendy but what I always thought was normal is not LOL. Also I had a black and white photo of me at about 10 years old and my knee is noticabley hyperextended and my shins are all bruised. When she asked if she could make a copy of it and left the room, I started crying. Crying for the child who always didn't feel well and legs hurt. Cried for what I might have been if I didn't have this genetic mutant and cried for my daughter who does.

My 14 year old daughter has a chronic stomache ache and flushing. I got her an appt. for April!

I am so happy to have a diagnosis and that my parents lived to hear what I've been bellyaching about for sooo many years, (they're 87 and 84 years old)

Title: Re: New York Area, Doctor Found
Post by Lisa on 01/07/15 at 05:19:47

WOOOOOHOOOOOO!!!!!

This is FANTASTIC news!!!! :D :D :D

It´s so great when we finally get a doctor who knows what they are seeing and can DO SOMETHING about it!!!

Good for you!!!! :) :) :)

Lisa

Title: Re: New York Area, Doctor Found
Post by Julie M. on 01/09/15 at 06:06:07

Hi all,

Been quite a while since I posted, but felt I should give quick update on Dr. Maitland's status.

I contacted her directly (via email) this week inquiring about making an appointment. Unfortunately, her response was not encouraging. She responded:

"At this time, I am unable to accommodate more patients with MCAS until a colleague joins the practice in September." :'(

She did (very kindly) offer to be available by phone to my local physicians, once I sent her all my medical records and responded to her office questionnaire. (History taking forms I assume.) Not sure, I'll do that at this point. Need to think about my comfort level of having a doctor I've never seen consult on my case based solely on medical records. Something I need to think over.

I have a great local team of physicians, but really need a MC expert to help guide treatment decisions. Dr. Afrin provides general info when I inquire, but I need something more targeted, given my ongoing symptoms. (Got my diagnosis from Dr. Afrin in 2012.)

Guess, I need to think this one over. But at any rate, wanted to pass along Dr. Maitland's status to others on the forum.

Hope you all are having a symptom free day!

Best,

Julie

Title: Re: New York Area, Doctor Found
Post by Lily9 on 02/11/16 at 13:19:11

I learned on 2/1/16 that Dr. Maitland is no longer accepting patients....apparently she is devoting herself to research.

Title: Re: New York Area, Doctor Found
Post by Joan on 02/11/16 at 19:19:47

It's so discouraging when we lose a doctor who understands! If anyone out there has a doctor who knows about mast cell disorders, please post the name and contact information.

Title: Re: New York Area, Doctor Found
Post by Julie M. on 02/17/16 at 14:17:52

I am still seeing Dr. Maitland although my appointments are few and far between. (Just have to space them out a bit with the cost of travel/accommodations.) When I saw her back in December she told me her wait list for MC patients was a year. She acknowledged that her MC patients take up a tremendous amount of time (no denying that!) and I sensed (though she didn't say so) that she was bit overwhelmed with the number of MC patients contacting her.

I'm a bit surprised to hear that she completely closed the practice to MC patients, but perhaps she just doesn't have the resources to see so many of us. I'm seeing her next month so I'll double check with her then about her status. I'll let you know if I learn anything additional.

Best to all,

Julie

Title: Re: New York Area, Doctor Found
Post by Julie M. on 03/26/16 at 07:27:01

Hi all,

I saw Dr. Maitland earlier this week and asked her about her status with taking on new MC patients. Here's what I took from our conversation...

She is no longer going to take on new MC patients where she is the primary treating physician. Instead, she is going to make herself available as a consultant to patients who are already working with a physician regarding potential MC issues. (Sounds very similar to Dr. Afrin's policy on patients needing to have a physician near their home that will be the "gatekeeper" for MC related issues. He's happy to consult/advise but doesn't want to be the primary point of contact.)

I did not get the impression that she was leaving her practice to go into research. (Although she may be doing research in addition to her practice.) She has an active and vibrant allergy practice in NY, so she keeps herself very busy, even without us MC folks!

Dr. Maitland really understands our plight. So while it is disappointing that she won't take on new MC patients, she is still available for consultation, which is better than the door being closed completely. :)

Hope this helps clarify...

Best,

Julie