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Finally a diagnosis (Read 2467 times)
missybean
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Finally a diagnosis
03/01/11 at 16:17:37
 
Well, finally my diagnoses. The doctor confirmed TMEP. She was happy with how I seem to be responding to the cromolyn sodium, and commented on how I seem to be so much more energetic and less flushed with which I do have to agree. I hope this isn't just a placebo effect. I'm supposed to go back in 6 to 8 weeks for another follow up.
I often wondered how will I feel when I finally get a diagnosis, would I be upset, relieved, happy? I really feel pretty calm, I guess because I knew in my gut this was what it was. I guess I do feel vindicated, that when I tell people I have certain sensitivities to foods or other things they just look at me like I'm doing it for attention, or when I'm hurting, or have brain fog it's mostly because of masto. Now I can put a name to it. I wish normal people would realize how important it is to people who have chronic health issues. I don't have to wonder anymore, am I losing it. I knew I wasn't but at times I considered what some people in my life told me to do....well stop always looking for symptoms, quit looking stuff up on the internet all the time, if you quit concentrating on it...it will probably go away. If I have learned anything from this whole process is trust yourself and your instinct, don't give up, and just because someone is an MD doesn't mean they know everything.
I really wanted to thank Deborah the forum founder.....thank you so much for creating this, with-out this I believe I would not be sitting here with the answers I now have. This has changed my life in more ways than you can know, the knowledge and information I have gained has truly helped. God Bless you!
Thanks to everyone who has gave me the information I needed, to look in the right places and ask the right questions. You know who you are THANK YOU! Love you guys!
Anyone who is still looking for those questions to be answered....what is going on with my body? Don't give up! I saw 12 different doctors. Twelve! That's to dang much.
I really can't believe how calm I am, I feel so at peace. Weird......
Melissa
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Kim
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Re: Finally a diagnosis
Reply #1 - 03/01/11 at 16:50:05
 
Melissa;

    I am SOOOO HAPPY for you!!!  It must be at least some comfort to not have to question your symptoms any longer and to have all of it now "verified."  I hear you about the 12 Dr.'s! - Brie is up to 13 and it is very wearing.  And for you to be able to give a friend, family member, co-worker or a Dr. a diagnosis instead of a list of unexplained symptoms is going to feel SOOO GOOD for you  Grin

                                               Stay well,  Kim
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missybean
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Re: Finally a diagnosis
Reply #2 - 03/02/11 at 09:47:23
 
Thanks Kim, for me I think seeing a female doctor made the difference, she was young too, so I think the arrogance wasn't there yet. I brought my path report with me, and I said to her in tears.....I feel like all the doctors I am seeing are not listening to what I am telling them, symptoms are being dismissed as simple things like dry skin(are you kidding me) I'm hoping that someone will look at the symptoms as a whole a consider that maybe they are related. I printed out tons of info on TMEP and Masto and took it with me. I also called before and asked if she had ever had a masto patient. Which she has. Have Brie's docs been able to tell you anything as to why she is having these reactions or are they shrugging their shoulders?
Melissa
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Kim
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Re: Finally a diagnosis
Reply #3 - 03/02/11 at 12:27:50
 
Melissa;

     Most of Brie's doctors are "specialists" (GI; Dermatology, etc) and each one would say that they new something was going on but they didn't know what.  They then wouldn't even consider tackling the "whole picture" as possibly "one illness" and would instead treat only their specialty area.  And then tell me to take her back to the Dermatologist for those issues, the Gastroenterologist for those issues, etc.  It wasn't until I took her to my sons Allergist / Immunologist and pretty much begged him to CONSIDER THE WHOLE PICTURE (as you did  Cheesy) that we got somewhere.  I sent him some history on her 1st and then he requested some records and I gave ALL of her records to him and he took a couple of weeks reviewing them.  It also helped the he was able to see many of her symptoms 1st hand during our 1st visit and he kept saying "this isn't right." She continued to have problems and saw him a total of 5 times in less than 2 months and she "performed" for him each and every time.  Thus he was quite concerned and he initiated the contact with a couple of other local Dr.'s and got them on board with his concerns. We now have 3 wonderful local Dr.'s (but none are Mast Cell Specialists).  They have all educated themselves on Mast Cell Disease and all 3 believe Brie has a Mast Cell Disorder and that she remains very unstable.  They have ruled out many other possibilities as they don't want to leave any stone unturned.  They are ready to pursue the Mast Cell Specialists for help now and in fact I received an email yesterday from one of them saying that he emailed Dr. Castell's and is awaiting a response.  I am keeping my fingers crossed!!!

                                                                Kim
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missybean
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Re: Finally a diagnosis
Reply #4 - 03/02/11 at 14:39:22
 
That's awesome Kim! Isn't it sad that you have to beg them to think outside the box. Isn't this forum awesome, think of all the information we have gained from reading all the posts and hearing peoples stories and experiences. I'm forever grateful. Keep us posted!
Melissa
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Lisa
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Re: Finally a diagnosis
Reply #5 - 03/02/11 at 15:53:48
 
HOORAY FOR MELISSA!!!!!!   YIPEE FOR HER DOCTOR!!!!!!!!!

I JUST LOVE HEARING GOOD NEWS LIKE THIS!!!   KEEP IT COMING!!!


Ladies, see a ton of doctors is really par for the course!  In the past 4 years I've seen perhaps 300 hundred doctors be it in hospital or out in consultations and what not!  It sounds exaggerated, but it's not - truly!  I've been through the majority of doctors in my town and also plenty in Rio and Sao Paulo and I consider everybody, not just consultations!!!   My insurance company would probably love to get rid of me if they could do so legally for I've seen a bunch and also gone through tons of testing, which doesn't end - I just saw yet another doctor and will be scheduling an endoscopy and conoloscopy with him.  

You've got to understand, it's not a statement on the quality of our doctors, but that of the rarity of our disease!  The more I find out about my own case, the more shocked I get as to how hard my case is and how rare it is too!   How can we blame our doctors for not thinking masto when the statistics say that IF a doctor sees but just one masto patient in his career he can consider himself fortunate!!  THINK about this statement a moment!   This is just how very rare masto is for our doctors and how many more rare diseases are there out there?  Rare means too few patients to have to worry about studying the disease!  They can't find it cause they don't even think about it, even if they have studied it before!  

So, although this helps you to have a bit more patience in working with doctors, it also gives you that much more appreciation of those doctors who DO recognize us!!!   If the patient is rare, the doctors who know the disease are even MORE RARE than us!

So, don't get impatient with the doctors, they are just as shocked and surprised by the disease as you are - if not more so!!!

CONGRATS Again Melissa!  This is great news!

Hugs!! Cheesy

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Donīt forget, there is so much more to life than being sick!
 
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