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@hopeful33250

Hello @ristene and welcome to Mayo Connect,

I am sorry to hear of this rare diagnosis. As you know, a rare disorder can be more difficult to diagnose and to treat. I hope that someone else will respond to your questions, I know how important it is to learn from the experience of others. We have many people in the NETs discussion group who have used Octreotide and some who have had PRRT treatments but not for this particular disorder.

I have also had a rare type of cancer, neuroendocrine tumors of the upper digestive tract. Right before my third surgery I found Mayo Connect and was glad to have others to share with me.

Since this is a rare disorder, would you care to share with us about your original (as well as current) symptoms and how it was diagnosed? From an article, I found on the NIH website it appears that a CT scan or MRI or the usual means of discovery. Here is a link to that article, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3328838/, however, I have not picked up on what type of symptoms are usually associated with this disorder other than excessive sweating, tachycardia and hypertension. Have you had other symptoms as well as these?

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Replies to "Hello @ristene and welcome to Mayo Connect, I am sorry to hear of this rare diagnosis...."

@hopeful33250 Thank you for your kind response. It does help to know that at the times you feel most alone there are other people out there struggling with similar diagnoses. I am a nurse in a busy diabetes and metabolism clinic. Late December 2018, I was on the phone with a patient and tilted my head to the right. Only seconds later my tongue rolled to the back of my mouth, I nearly lost my voice and had slurred speech. I immediately placed my patient on hold and tried to tell my co worker what had just happened. I thought I was having a stroke. I had facial numbness and tingling from the corner of my mouth on the right side to my right temple. My physician works in the same clinic so I discussed this with her. Ultimately, we decided to hold off on imaging given the end of the year and treated for Bell's Palsy with high dose antivirals and steroids. My symptoms got slightly better but not much. It was the beginning of a new year and I thought, I'll have the MRI and nearly meet the deductible. I didn't think much of it as I'm already drowning in medical bills from my suspected diagnosis of seronegative Rheumatoid Arthritis four years prior. On January 9th I had a head and neck MRI and sure enough it showed a paraganglioma. I had never heard of this nor had my physician. She called around town to the oncologists, ENT, radiologists etc and ultimately told me she didn't know what it was but would get me where I needed to be. Prior to the diagnosis I had multiple symptoms that I chalked up to other diagnoses. For example: palpitations, chest pain, shortness of breath, headaches, ringing in the ears,flushing, hot flashes, excessive sweating, intermittent diarrhea. After diagnosis, the symptoms became stronger and started occurring more frequently than they had before. Interestingly enough, my heart rate hasn't been elevated much only during times of stress (normal) and my blood pressure hasn't been high (minus during a cold, also normal).