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west coast doctors (Read 353 times)
Riverwn
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Re: west coast doctors
Reply #15 - 01/01/11 at 09:41:21
 
(Archived from csiii - original forum)
csiii

I've seen Dr. Gary Schiller at UCLA. He is the one that definitely confirmed that I have SM. He is the director of the Hematological Malignancy / Stem Cell Transplant Program. I saw him to see if I qualified for a Mastocytosis research program. I was referred to him once, but my insurance company won't allow me to go back. He is the first doctor I've met that actually know what Mastocytosis is. He may be the man you are looking for. My allergist in Redlands, Dr. Mabudian with Beaver Clinic, is learning about the disease right along with me. He has been consulting with someone at the Scripps Institute in San Diego. He is the one that has gotten me on the right cocktail of antihistamines and gastrocrom to control my attacks. Good Luck. I hope this helps. Dale
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20 December 2009 11:17 PM
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Riverwn
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Re: west coast doctors
Reply #16 - 01/01/11 at 09:42:45
 
(Archived from amiann - original forum)
amiann
It's been almost a year since the last post on this subject.  I have seen one dr so far regarding masto.  I would LOVE to see another one for a second opinion.  On what?  not sure.  I live in the Seattle area and was wondering if anyone has actually seen these drs mentioned above?  Also, very interested in a support group here in the Seattle area.  Anyone in this area?  My dr. told me that I was 4 in a million.  Wouldn't it be cool to have a map with pin points of where we all are?
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09 October 2010 06:22 PM
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Riverwn
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Re: west coast doctors
Reply #17 - 01/01/11 at 09:44:10
 
(Archived from brigittegriffith- original forum)
brigittegriffith
Hi Deborah! I would love to find a doctor on the west coast to help me deal with my autoimmune chronic urticaria. My doctor's here in Reno only accept symptoms of the disease to be flushing, swelling and hives, and if I don't have any outward signs, they say I'm fine when in fact I feel like ^&(&*!
I feel that there is much more going on...panic like symptoms and GI problems that could be connected tot his disorder. I would like to find a doc who knows more about it and can rule these symptoms in or as as far as being connected to the CU.  If you have any suggestions I would greatly appreciate it!
Thank you,
Brigitte
30 November 2010 10:24 PM
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Riverwn
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Re: west coast doctors
Reply #18 - 01/01/11 at 09:47:18
 
(Archived from jysmith - original forum)
jysmith
Brigitte,

Have you seen an endocrinologist?  Can't remember if I mentioned it before, but with the amount of anxiety/panic you're having, I can't help but wonder about adrenal problems.  That might be another thing to rule out, and maybe, if you get a good endocrinologist, that doctor might refer you to a masto specialist if he/she can't find anything endocrine.  Just a thought.
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30 November 2010 10:34 PM
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Re: west coast doctors
Reply #19 - 01/01/11 at 09:48:35
 
(Archived from bobkeenan - original forum)
bobkeenan

In Sacramento my Doctor is  Dr. Rosemary Hallett.  She has been treating me for about 5 years.  I am the 3rd masto patient that she has had.  She arranged for my blood, urine, and bone marrow testing.  All done at UC Med center.  Although some of the tests  (c-kit) were sent somewhere else.  She has been in communication with the NIH and also arranged for a visit to Stanford.
01 December 2010 03:16 PM
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Susan
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Re: west coast doctors
Reply #20 - 04/26/11 at 07:54:39
 
I'm looking for a doctor in Northern California. It sounds like Dr. Hallet in Sacramento might be a possibility. So far I have only seen Dr. Michael Martin, an allergist in Santa Rosa. He is going to do initial testing for me, but I don't know what is next. He didn't even want me to make a follow up appointment, just told me to call a week after I had the tests done. I don't know if this is good or bad. I'm hoping he would refer me if it looks like masto, but what if he just drops it?

I also found the name of Dr. Jason Gotlieb at Stanford. He is a hemotologist and medical oncologist, says he works with mast cell disorders. Anybody heard of him?

I don't think I could survive a trip to the east coast now. I haven't been able to travel for the last five years, and can't imagine going to a strange city and having to get around, as well as manage any testing. If I can do it within a couple of hours drive, life would be much more manageable.

Any California folks?
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Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
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Lisa
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Re: west coast doctors
Reply #21 - 04/26/11 at 13:19:49
 
Dr. Gotlieb is EXCELLENT Susan, but if you've got Systemic mastocytosis.  I've spoken with Dr. Gotlieb and he prefers to work only with ALREADY diagnosed masto patients.  He knows we're a lot of work to diagnose and he prefers to only treat those who really need him, those patients who have the neoplasm and preferably those who are aggressive or smouldering masto.   However, you may want to contact him and ask him for who he might know of who could do a work up of your case for diagnosis.   He should know who the doctors are who send him patients.  

Lisa
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Susan
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Re: west coast doctors
Reply #22 - 04/26/11 at 14:33:32
 
Lisa, that is really good news!! I was hoping Dr. Martin would be able to get me to the point of diagnosis, and then I would see if he refers me, or if he could treat. I was surprised that even though my appointment was scheduled for allergy testing, he immediately went to masto testing for me. So I am hoping he is OK. But contacting Dr. Gotlieb for suggestions is a good idea.

Doctors out here are thin on the ground for any type of treatment. I'm keeping my fingers crossed that one of these works out for me, if I have mast cell issues, that is.
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Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
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Re: west coast doctors
Reply #23 - 01/21/12 at 09:57:54
 
I want to add these doctors to this post.

I just came back from UC Davis, where I saw two doctors who know about mast cell disorders, and I know there are at least three more. I originally found them by doing a search on doctors, mastocytosis, and California. Several of these doctors participated in a paper called Mastocytosis, the Great Masquerader (http://www.ncbi.nlm.nih.gov/pubmed/16461996) and Contemporary Challenges in Mastocytosis (http://www.ncbi.nlm.nih.gov/pubmed/19639428).

I was supposed to see Dr. Eric Gershwin, who is one of the authors on these papers. For some reason, he was not in, but I saw Dr. Fatima Ali, who is an intern, and another doctor who was supervising, and only ran in briefly.

Anyway, Dr. Ali was VERY friendly, interested, and seemed quite knowledgeable. She talked to me a lot about what medications I am taking, and much more about how much I could safely take, and what concerns there might be. She went over the use of the Epipen much more thoroughly, not so much HOW, though she did do that, but also when. As I am a leaker (don't often have anaphylaxis), I have been very confused about when I should use it.

She knew about the new WHO criteria, and also about the proposed MCAD criteria, though they are not as big into the MCAD there. Doesn't mean they wouldn't treat necessarily, just they called my issue idiopathic for now. They were very emphatic that I do need treatment! Also, that even with my lower tryptase, that I need a bone marrow biopsy, as my GI biopsy shows signs, but the report was not clear enough to give an absolute diagnosis.

So, the doctors at UC Davis who know enough about masto to be involved in research are M. Eric Gershwin (http://www.ucdmc.ucdavis.edu/referrals/specialists/biodetail.asp?bioid=297&searc... ),  Rosemary Hallet ( http://www.ucdmc.ucdavis.edu/search/faculty/biodetail.asp?bioid=881&searchtype=&... ), Suzanne Teuber ( http://www.ucdmc.ucdavis.edu/referrals/specialists/biodetail.asp?bioid=474&searc...), and the internist I saw, Fatima Ali (Allergy and Immunology).

The local PNW support group also gave me the name of Natalyia Kushnir in Berkeley. ( http://www.allergynk.com/index.html ). I did write to her to ask if she knows about MCAD, after calling the clinic and talking with their reception. The receptionist told me to email the doctor, and even gave me her email, but I never heard back from her. I may try again, as she is slightly closer than UC Davis, for me.

The docs at UC suggested I find a local hematologist, and talk to them about doing the bone marrow biopsy, so I woudl not have to travel.  They even think a hematologist would know enough to be able to follow my treatment. I will have to see if that is true. However, they are well set up to do the testing at UC Davis, and would have me back if that is what I choose. There is also Dr. Gotlieb at Stanford, if I got an actual diagnosis based on the bone marrow biopsy.
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Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
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