DeborahW, Founder
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There is too much judgment going on here, and I really don't approve of it. As this is a forum, everyone is entitled to share their opinion. Everyone reading needs to understand that this is their opinion. What you choose to do with that opinion is your choice.
Now, I am not going to defend Dr. L or defend Jewels. However, it appears that everyone is getting away from the point. Jewels stated that she felt that she had no testing done at her appointment and that she does not have anaphylaxis. We don't know if she doesn't have anaphylaxis based on her opinion or the doctor's opinon.
What we can see is that she was told to go off of meds to do allergy testing. Do I personally agree with doing that? Absolutely not. My allergist told me that he would never have me do that due to possible dangerous reactions, and he tested me by drawing blood and doing blood tests.
We also hear that Jewels was told to begin allergy shots. Would I personally do that if I was having constant flushing? No way. To me flushing is indictating some sort of mast cell symptoms and my personal opinion is that allergy shots would make one worse, possibly permanently so.
I don't see why we are jumping to conclusions regarding that Jewels has been told she told she doesn't nave IA or MCAS. From what she reported, the only thing she mentions is that she doesn't have a mast cell disease. She doesn't say that the doctor specifically mentioned the other ones and it is not fair to the doctor to say that he must not be one to diagnose MCAS and only diagnoses IA instead. No one knows what labels and conditions he diagnoses, so let's not say that he isn't open minded because that isn't fair to him, especially in light that Jewels (the patient who saw him) doesn't say that.
So, the concern for Jewels is that she believes he told her she has no mast cell disease. What is her next move? Jewels, I think that since you are in NC, you are close to Dr. Afrin and you should go see him. It doesn't mean that you are ripping on Dr L to get a second opinion. In fact, all good doctors know that second opinions are important to patients and they don't take it personally. My doctor is Dr. Akin, but if I felt that Dr Castells knew more about MCAS/IA (I have IA), I wouldn't mind going to her and I am sure he wouldn't be insulted because I did so either.
On a side note, IA and MCAS are both the same mast cell disease but one is a more extreme version of the other. This comes from when I posed this question to Dr. Akin. I, myself, don't actually understand what that means entirely, but they are both mast cell disease and in the same "family" shall we say.
Lastly, discussion is not allowed to be a roast of Dr. L or Jewels. I believe what Jewels has written. I believe that perhaps there could be more to the story -- I know that my memory stinks and I could report something and unknowingly leave out part of the important details.
Jewels, should Dr. L want to add any information, he woud not be able to here because he can't talk about your case. If you would like to post that he is welcome to, then he could if he were interested. I can't have anyone doctor bashing and the doctor is stuck by not being able to explain things. I also won't have anyone patient bashing, so if anyone is about to start bashing Jewels, hold off because I won't allow it on the forum.
Jewels, I think it is good that you shared your experience, because people can decide for themselves what they choose to take from it. The purpose of this post, though, was not to discuss Dr. L (in fact she never mentioned his name until specifically asked) and to help Jewels find her next move and next doctor to see.
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