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lpate (@lpate)

Could I have NET?

Neuroendocrine Tumors (NETs) | Last Active: Nov 24, 2020 | Replies (4)

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@hopeful33250

Hello @lpate and welcome to the NET discussion on Mayo Clinic Connect.

I am sorry to hear of the multiple symptoms you are having, I'm glad to know that you went to an epilepsy specialist to have this diagnosed more carefully. You are very wise to seek a second opinion with a specialist who deals specifically with this problem.

If you are interested in ruling out a diagnosis of NETs you should be seen by a GI specialist to be sure about that. An EGD (upper endoscopy) and a colonoscopy would be a good idea to rule out that diagnosis. Are you having any specific GI problems such as diarrhea, hot flashes, etc.? If you look at the Carcinoid Cancer website you can find some more information about NETs, both symptoms, specialists as well as treatments. Here is the link to their website, https://www.carcinoid.org/

I would also encourage you to visit our eplepsy discussion group. Here is the link to that discussion, https://connect.mayoclinic.org/group/epilepsy-2bb359/. I would like to invite @jakedduck1 to this discussion as well.

@lpate, why are you thinking that you might have NETs? Does this disorder run in your family?

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Replies to "Hello @lpate and welcome to the NET discussion on Mayo Clinic Connect. I am sorry to..."

Hello @lpate,

It has been a while since you last posted about your many health issues. You were thinking about the possibility of a NETs diagnosis. Are you still looking for answers in this area? I would love to hear from you with an update when you have time.