Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> In need of encouragement RIGHT NOW! >> desparate for a local doctor!! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1350085223 Message started by lynda51 on 10/12/12 at 12:40:23

Title: desparate for a local doctor!!
Post by lynda51 on 10/12/12 at 12:40:23

I have been searching for a local doctor for 13 months. I have been "passed off" from doctor to doctor and no one will deal with the mast cell disorder.

I am in a large clinic system. The biggest problem is my oncologist agreed to help me and then disagreed with the diagnosis (doesn't believe mast cell activation exists and doesn't believe I have it). Because he is a VIP and VID (Doctor) I feel this has literally kept me from receiving the care I need.

I have started the process of getting his statement removed from my medical records but fear the damage is already done.

I have looked into a concierge doctor and the closest one is over 3 hours away. I would still need someone local to manage any acute needs.

I have two nurse case managers and a nurse navigator helping me. They have been on board since last March.

Have any of you experienced this? Do we have any legal rights to receive care?? I REALLY don't want to even look at legal counsel but am just not sure where to go next.

I JUST got a call from this 'wonderful' medical system telling me that there is NOT ONE doctor in the allergy/immunology dept. that will take me as a patient. They left a message 4 minutes before the clinic closed.... :'( I am devastated.

My primary care doctor "dropped me" last month and I am looking for a new primary. They will take care of "the rest of me" but not the mast cell disorder.

How can you take the cells out of a person and just treat the rest?????

I am tired...starving and ALL my hair is falling out. (but otherwise my symptoms are fairly well controlled after Dr. Greenberger doubled my cromolyn!!)

If anyone has any ideas PLEASE post!! I know many of you have had problems, but I have NO place left to go!

Thanks!!!!!!!!

Title: Re: desparate for a local doctor!!
Post by Joan on 10/12/12 at 13:30:48

Lynda,

Has your oncologist seen Dr. Moulderings and Dr. Afrin's article about MCAD/MCAS in the Journal of Hematology and Oncology? Here is the reference to it, in case he'd take a look at it. If you can't get it, I can try to email it to you.

Molderings et al. Journal of Hematology & Oncology 2011, 4:10

http://www.jhoonline.org/content/4/1/10

I'm giving it to my allergist with the hope he'll read it and learn how to differentiate for his patients. Hoping!

Did Dr. Greenberger address any nutritional deficiencies in any way?

I wonder if the boutique doctor has any solution for the problem of distance. This doctor situation is so disturbing! I hope Dr. Afrin finds a marker for MCAS soon!

Title: Re: desparate for a local doctor!!
Post by Anaphylaxing on 10/12/12 at 15:05:32

Any chance you can see Dr. Castells or have you already?

If not could you be managed by the GI doc and a supportive primary care doc (IF you are able to find one?). A supportive general GP or internist could liase with an expert remotely on your behalf....

so sorry about all this. GOOD LUCK