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DiscussionDifferentiating Carcinoid syndrome from MCAS?
Neuroendocrine Tumors (NETs) | Last Active: Aug 24 9:28am | Replies (23)Comment receiving replies
Replies to "is it typical for carcinoids to have severe itching on head and face on top of..."
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Hello @jsudjian and welcome to Mayo Connect. I see that you have had bad itching and flushing for a couple of months. I am sure you would like an answer to this problem; it sounds very uncomfortable.
I am glad that your medical team is looking at various possibilities for these symptoms. From what I know of carcinoid syndrome, flushing is a feature, but I have not heard of itching. It is important to give your medical team time to work out the various reasons for these symptoms.
Share, as you are comfortable doing so, some of the diagnostic tests that have been done so far. Any tests that are scheduled for the future?
As this diagnosis might take a while, try to do some things you enjoy, like taking a walk, meeting with friends for a meal, reading a good book, going to a movie, listening to music. Relaxation is important as you wait for an answer for these physical symptoms.
As you have mentioned four deaths in the last year, I would also encourage you to join the Loss and Grief support group on Mayo Connect. Here is a link to those discussions: https://connect.mayoclinic.org/group/loss-grief/. Use these discussion groups to write about your losses and read what others are saying. Also, you might look into an in-person grief support group in your area.
In the meantime, keep posting on Connect. Share your concerns as well as the progress of your medical team. Remember that there might not be a quick answer to these various symptoms, so take good care of yourself during this discovery process.
Will you keep posting updates and questions?