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west coast doctors (Read 11503 times)
Riverwn
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west coast doctors
01/01/11 at 09:00:21
 
(Archived from laurasis - original forum)
laurasis
My sister was just diagnosed with aggressive systemic mastocytosis (with a bmb).  Is there a doctor on the west coast that understands this disease?
22 April 2009 10:19 PM
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Riverwn
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Re: west coast doctors
Reply #1 - 01/01/11 at 09:01:58
 
(Archived from triciag - original forum)
triciag
If you get the same information twice from me , I'm sorry.  I accidently clicked the wrong tab and lost everything.  I think there is another member on this Forum thats looking for a dr on the west coast.  On  www.tmsforacure.com  is how I found out about Deborah the founder of this forum.  She is the support group leader of the midwest, and I found out by her where I should go in Illinois for help.  I emailed a member from the Washington State group support.  That was a few days ago, and I havent recieved anything yet.  But you might have better luck contacting them.  I found some phone numbers on the site.
California:  Juanita Anderson  323-930-1954

Washington State:  Forrest Hansen  425-827-6366
                          Tari McKenzie  425-640-8233

Looks like they don't have a support group yet for the state of Oregon.  Hopefully you'll be able to contact these members and maybe they'll be able to help you find a Doctor for your sister.  If you dont have any luck contacting them, I'm sure Deborah might be able to help.
22 April 2009 11:04 PM
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Riverwn
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Re: west coast doctors
Reply #2 - 01/01/11 at 09:04:01
 
(Archived from jillian - original forum)
jillian
Hi Laurasis, Welcome to the forum. I'm a new member here too and like you I'm trying to find a doc a little closer to me then Boston! I'm in Oregon. Are you or your sister in this area? Who diagnosed her? I'm waiting for the final Bone Marrow results then I think my doc may continue to treat me if the result confirms a mast cell disorder. However I would be his first patient with a mast cell disorder. Otherwise he said he'll have a hard time calling it a mast cell disorder. He said he nor these tests are the final say but didn't feel qualified to diagnose me if the test is not conclusive. It sounds like some of the members on here have gotten a diagnosis from a specialist without conclusive tests. He did start me on Gastrocrom though to see if it would help. I think it just may be helping. I've been on it since Monday. Anyway, good luck with your search. I'll post info about doctors in this area if I have any luck.
Jillian
23 April 2009 02:52 PM
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Re: west coast doctors
Reply #3 - 01/01/11 at 09:05:57
 
(Archived from laurasis - original forum)
laurasis

We are in Southern California.
23 April 2009 07:45 PM
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Riverwn
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Re: west coast doctors
Reply #4 - 01/01/11 at 09:24:10
 
(Archived from deborahw - original forum)
deborahw
Hello, hello! I think I "heard" my name mentioned! LOL. I am so sorry that I have been absent lately from participating on my own forum! (My little girl had an accident, so we have just been dealing with surgery, etc. Happily, she will heal up and be just fine!)

Anyway, I can take a few minutes now and welcome you both in the manner that you deserve! Smiley  It is such an amazing feeling once you have found the right mast cell disease specialist who can help you and turn your life around! So, we just need to help you both find that person! Jillian, it is nice that you have a doctor willing to help you, but we need to get you someone who really knows mast cell disease, because there are so many things that they can suggest to help you. If you bmb comes back negative, you could still have mast cell disease (like me, only it is called Mast Cell Activation Disorder by some and Idiopathic Anaphylaxis by other doctors). Also, depending on who did your bmb and where it was tested, it could actually come back with a false result. (I hate telling people that, but that is what I was told by Dr. Akin, who you probably know is a world renowned masto researcher.) Dr. Akin told me that there are only a few places in the US, that truly know how to test correctly for masto. Examples of these places are: Univ of Michigan (Dr. Akin's lab), NIH, & Mayo Clinic.

I can email Dr. Akin and ask him if he recommends anyone in your areas. Just to doublecheck: Laura -- you are in Southern California, and Jillian -- you are in Oregon. Correct? Anyone else need to me to ask about recommended doctors in a certain area? Let me know asap, and I will email Dr. Akin in the morning and see if he can help us out!

In the meantime, I would urge both of you, Laura and Jillian (and any other newcomers) to read the topics in my FAQ section if this forum to get you started in the right direction. We have so many helpful people here now, so if you keep reading, you will soak up all sorts of good tips and knowledge. That is the key secret to taking control of your illness and helping yourself get better -- educating yourself as much as you can and learning what your personal triggers are and how to handle/avoid/prevent them.

Welcome, again! Smiley
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Deborah
23 April 2009 09:40 PM
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Re: west coast doctors
Reply #5 - 01/01/11 at 09:26:05
 
(Archived from jillian - original forum)
jillian

Hi Deborah, Thank you so much for looking into a doctor in this area. It would be great not to have to fly to Boston but I will if I have to. My doctor sent the BMB to Portland Oregon, Oregon Health & Science University Hospital. He said they would do the c-kit test but still, like you said they may not know how to do it correctly. Can they diagnose what it is without a "positive test" somewhere along the way? Is it a clinical diagnosis based on symptoms and other common health issues that other people have with mast cell disorders? Every symptom and health issue I have falls under mast cell disorder. I've been researching this for six months now and the more I read the more I know I have a mast cell disorder. I've kept an open mind and researched so many other disorders but I keep coming back to this. It's the only thing that makes sense! It describes me exactly! With the other disorders there's always a handful of symptoms I definately don't have and a ton of stuff I have that those other disorders would not cause. We've ruled out so many other possible things through miriad of tests. I feel like my doc thinks I'm "beating a dead horse" so to speak. I gave him the same health history I posted here and have tried to talk with him in more detail about what it is I experience on a daily basis but I feel like he still doesn't get it. Not because he's not a good doc but because he doesn't specialize in mast cell disorders. He wants a solid test result that says yes or no! I would love to talk to a doc that says "I know exactly what your talking about"! That's what I need. That's what we all need. Mentally and emotionally I think I will be in a much better place once I have a diagnosis. That can only help the physical stuff cause it's all connected. Wink
Thanks again,
Jillian
24 April 2009 02:43 PM
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Re: west coast doctors
Reply #6 - 01/01/11 at 09:27:38
 
(Archived from manuella - original forum)
manuella

Hi Deborah, Jillian, Triciag...

I just noticed a posting on the Canadian forum regarding a positive experience with a doctor working out of the university of Washington (believe it's in the Seattle area). I think Jillian is in Oregon, but let me know if i should check on the details for you!  I agree, the closer to home you can find someone to help you with your condition, the better.  I travelled all the way to Boston last year to see Dr. Castells, which was wonderful as she verified my MCAD/MCAS, but i've returned home to the black hole of masto patient care here in BC where they do not recognize or respect this diagnosis.  But having said that, the trip to Boston was worth it in the fact that i was finally validated by Dr. Castells which meant the world to me after my 6-year struggle for diagnosis here in Canada.  At least i know that i'm not crazy, even if all the docs here think i am!
24 April 2009 07:12 PM
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Re: west coast doctors
Reply #7 - 01/01/11 at 09:28:59
 
(Archived from jillian - original forum)
jillian
Hi Manuella, I would definately be interested in his name. I have family near Seattle. It would be a 5-6 hour drive and I could stay with them. That would be great if you can find out more. Is he a mast cell specialist? Is it the doctors triciag mentioned at Washington State?  Forrest Hansen was one of them.
Jillian
24 April 2009 09:13 PM
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Re: west coast doctors
Reply #8 - 01/01/11 at 09:30:37
 
(Archived from anuella - original forum)
anuella

Hey Jillian,
A positive comment was written on the Canadian mastocytosis forum regarding this doctor, so this reference is not my personal experience, but seemed definitely worth sharing here for western US residents.  The patient saw this doctor recently and he apparently has patients with mastocytosis/mast cell disorders and seems to be in touch and knowledgeable of the leading doctors/researchers in the US. His name is Dr. Wedner and his specialty is allergy/immunology.  He is affiliated with the University of Washington.  Here is a link to a webpage with some more info:

http://mednews.wustl.edu/sb/page/normal/163.html

Now, i've just looked back through some old paperwork of mine, and i was given this contact a few years ago by Nancy Gould (a wonderfully knowledgeable masto patient currently living in New Zealand but originally from the Seattle area).  Anyways, here is another possibility.  This doctor is a hematologist and specializes in myeloproliferative disorders/leukemia which tells me he may be an appropriate doctor for more severe/aggressive forms?

Dr. Maruo
Assistant Professor
Center for Hematologic Malignancies
Oregon Health and Science University

http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=10932

ps:  As far as i'm aware the people Triciag mentioned are TMS patient support group leaders for their areas (Juanita in California and Forrest and Tari in the PNW).  Definitely worthwhile calling them up for any further possibilities regarding information!)

Hope something turns out to be helpful here!
25 April 2009 12:49 AM
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Re: west coast doctors
Reply #9 - 01/01/11 at 09:32:10
 
(Archived from deborahw - original forum)
deborahw
That is correct: Forrest and Juanita are patients like us. I don't know Tari....
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Deborah
25 April 2009 08:31 AM
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Re: west coast doctors
Reply #10 - 01/01/11 at 09:33:54
 
(Archived from orenep - original forum)
orenep
Hi everyone ,
I Am new to this forum... found it by luck while googling .I  skipped over the intro part for now sorry  i have more important things on my list what is being shared in this thread , a 'west coast  doctor'.
I too am in a desperate search for one as close to the pacific northwest as possible  for my 20 Yr old daughter. She was born with boulus <~~spelling Urticaria Pigmentosis and Diffuse cuntanous masto.. She  was still being seen by doctors at Pediatrics northwest who treated her most of her life up until a week ago when she found out she is 5 weeks pregnant..

They wont see her anymore and dont know where to send her and we are in a complete panic because they told her she had to stop taking her hydroxyzine as it will hurt the fetus and they couldnt tell her what she should take  in its place . Hydrox.  has been one of the two maintenace meds that has kept her stable..

We had hoped of coarse she would be a lucky one and out grow this .. needless to say she hasnt so we have no clue whats down the road for her .. We definatly need a med team for this one  .. Im really worried what we are going to do if she starts hiving out  or a masto attack is triggered since its been a week since she has been on the hydrox. she is still taking her rinitadine.. She was having cramps and we took her to the ER and like always new doctors and not one that has even heard of mastocytosis .. Even more frusterating wont listen to me because im just mom and Emma is 20 now.

The immunologist my daughter was seeing was also pediactric and was good at contacting the docs at the NIH but now she is adult and pregnant it seems as though we are having to start all over  with little time to spare ..    Sad

One thing we do know for certain with my daughter is she does not need the diagnosis she was already diagnosed years ago.

If anyone finds someone I  too would appreciate the info. Like wise if Emma and I  find someone before then i will pass this along to all of you ..

Thank you,

Corene Peek
Tacoma/Seattle

PS. Is the washington st. support group still together .. We had tried to contact them via  email and no luck so far .. We use to belong to the group but lost our internet and all the contact info along time ago.
02 May 2009 03:18 PM
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Re: west coast doctors
Reply #11 - 01/01/11 at 09:35:15
 
(Archived from corenep - original forum)
corenep
Hi again everyone..
A update on finding a doctor I was just in contact with  the Allergy/immunology dept at Virgina Mason Hosp in seattle Washington.
I thought i had remembered a name from way back while attending a NW support meeting and asked Emma's Ped allergist if he knew how i could find out ..  I had lost the paper he had printed out for me and thru a week of digging  hole's in my house a like a squirrel who forgot where it buried its nut I found the paper !!! The Dr. is  David M. Robinson I gave them a call for Emma and they confirmed they have several mastocytosis patients and gave Emma a Appt for the 27th Because of the urgency!! Not only does he see masto patients but there is another dr in the clinic that also does !
 I was really impressed as the receptionist wanted to besure that Emma give her obgyn when she see's  him on the 21rst  Dr Robinsons consult number in case  he has any questions /concerns before she see's him on the 27th .. She said also that way if emma has issues before then Dr Mitchel can call him to make sure what is safe or not safe to give Emma ..  man im hoping this one is the one!!
There was more but i will keep it short!! SO hopefully We found a NW doctor familair with this ..( i still have the to good to be true thing going on in my head , been a long haul raising a child with a rare disease )
oh also mean time if anyone hears of parents with babies that need a doctor in our area i highly recomend Dr Jeoffry Jacobs he has had a mastocytosis education with Emma and has been right on top of the tryptase levels and staying in touch with the NIH doctors for us when Emma was in trouble  
Smiley  CoreneP
Tacoma/Seattle
07 May 2009 06:43 PM
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Re: west coast doctors
Reply #12 - 01/01/11 at 09:36:53
 
(Archived from susij - original forum)
susij
Hello Everyone,
I am new to this forum and am so happy to have found it-lots of great information.  I am looking for a mast cell doctor in California (if one exists!)-speifically Southern Cal.  I've been looking over the posts and tried to call Juanita Anderson (listed above), but the number was disconnected.  Can anyone help point me in the right direction?  I've looked on the TMS site, but we don't have a support group listed for California.
Thanks for any help on this!
Susi
10 August 2009 01:16 PM
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Re: west coast doctors
Reply #13 - 01/01/11 at 09:38:20
 
(Archived fromfaithberry - original forum)
faithberry
You could ask mastomama (carla), she's in southern california and has a mast cell doctor.  Just google mastomama blogspot to find her.
11 August 2009 08:32 AM
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Re: west coast doctors
Reply #14 - 01/01/11 at 09:39:42
 
(Archived from susij - original forum)
susij

Thank you!!!
11 August 2009 09:45 AM
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