Could I have NET?

Posted by lpate @lpate, Jul 27, 2020

Curious if anyone is willing to share what symptoms they had leading to a NET diagnosis.

I am an 18 year old female who has been struggling with some medical issues over the past 2 years. I was initially diagnosed with epilepsy because of a couple fainting/seizing spells and severe headaches. After being put on seizure meds, these symptoms (debilitating headache, abdominal pain on Zonisamide) seemed to worsen so I chose to get a 2nd opinion from an epilepsy specialist. After a normal sleep deprived EEG, she agreed with me that she did not think this was epilepsy, but something else. After stopping the meds, I felt like a new person. However, since last summer, the issues have seemed to come back and gradually worsen. I still get occasional headaches and abdominal pain but not to the degree as when on anti convulsants. Although, I am passing out more frequently (2x in one week the beginning of this month) and have frequent cyclic episodes of nausea/vomiting. I cannot complete common tasks without feeling faint or nauseous. Just yesterday, I was pumping gas and almost fainted in the parking lot. Furthermore, GI seems to be affected and upset. I have had MRI/CT of brain and abdomen which was normal. Blood work came back normal except for cortisol which was high ~40. (May be due to birth control?)

Did anyone experience anything similar?

Hi Ipate. Sorry to here of your multiple problems. I did not have any problems and my Pancreatic NET was discovered during a routine liver biopsy. Bu, it sound like you have not gone to a Gastroenterologist yet? I would suggest you make an appointment. There are several Lab tests that can help in diagnosing if you have a NET cancer.
Chromogranin A and 5HIAA and Pancreastatin. These are the most recent tools used in the diagnosis of NET cancers. MRI‘s and CT’s do not always show NET cancers, but, there is also the Gallium 68 scan that is limited to certain hospitals that can detect active NET cancers. Definitely make an appointment with a good GI doctor and see if he/she can run those 3 lab tests.

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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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@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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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.

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Hello @lpate,

I hope that you are getting some relief from the symptoms you have been having. Any updates that you would like to share?

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Omg @lpate …… I so feel for you. I've been struggling close to 5 years now and even though I've seen multiple docs no one can figure it out. So I'm doing my own research. Tried a lot of supplements, most all are working for me. And eating a lot healthier too always checking labels and listening to my body. but I see you havn't posted in a while so I hope all is well 🙂

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