zella
Pearl Clutcher
Posts: 3,884 
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Post by zella on Sept 1, 2016 5:15:06 GMT
These are two syndromes drs are trying to rule out.
Tonight I had one of my "episodes." I suddenly came over very hot, my skin became very flushed on my upper body and face. At the same time I got abdominal cramps, diarrhea and severe nausea. And my blood pressure went high (about 210/110).
I'm so scared and so tired of this. I had a good day. I have no clue what triggered this episode. None. I'm so desperate for someone to figure out what the hell is wrong with me and offer me, if not a cure, at least treatment.
Any peas have experience with either of these?
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Post by grove420 on Sept 1, 2016 7:45:13 GMT
I'm sorry I have no suggestions for you but just want to send my best wishes for a corrective diagnosis very soon. It sounds just miserable and I'm sure it is frustrating. Good luck.
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Post by welshjenni on Sept 1, 2016 11:17:03 GMT
I am sorry that I don't have any suggestions - I can imagine just how scary it is for you and hope that they are able to come to a diagnosis for you very soon. Take care xx
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RedSquirrelUK
Drama Llama
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Location: The UK's beautiful West Country
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Post by RedSquirrelUK on Sept 2, 2016 15:27:44 GMT
Not me either, but that sounds miserable. I hope you can get a diagnosis.  |
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melissa
Pearl Clutcher
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Post by melissa on Sept 2, 2016 16:35:42 GMT
I learned about these in medical school and recently saw a case of carcinoid syndrome in a pregnant woman. It's the only time I can recall seeing it. She had been treated for high blood pressure for the previous year or two. Came in with pain that led us to find some adhesions. Inside those adhesions was her appendix. It actually looked pretty normal, but the pathology revealed it was a carcinoid tumor! She had a few other symptoms, such as the flushing, which was attributed to her pregnancy. Her blood pressure normalized. The tumor, while symptomatic, required no further treatment.
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zella
Pearl Clutcher
Posts: 3,884
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Post by zella on Sept 2, 2016 22:13:47 GMT
Bumping this in hopes of getting mor responses.
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Post by M~ on Sept 2, 2016 22:50:17 GMT
My aunt was diagnosed with this many years ago and we are now learning that she left it untreated. She is NOT doing well right now.
ETA: she also never told anyone of the diagnosis.
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Post by tenacious on Sept 2, 2016 23:08:33 GMT
Zella-I will read and post a little later. Sorry! On mom duty..
Erin
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Post by scrapmaven on Sept 2, 2016 23:18:08 GMT
Though I'm unfamiliar w/both diseases, sounds like your doctors are at the "fishing" stage and trying to rule out whatever they can in order to rule in the actual cause. When are they going to run the labs and do the scans? It just sucks that you have to be this miserable and in the dark about what's causing it.
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Post by flanz on Sept 2, 2016 23:24:10 GMT
(((HUGS)))) I hope you get answers and treatment soon!
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zella
Pearl Clutcher
Posts: 3,884
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Post by zella on Sept 3, 2016 1:27:44 GMT
Though I'm unfamiliar w/both diseases, sounds like your doctors are at the "fishing" stage and trying to rule out whatever they can in order to rule in the actual cause. When are they going to run the labs and do the scans? It just sucks that you have to be this miserable and in the dark about what's causing it. I'm in the midst of the scans and lab work right now. A 24hour urine test probably ruled out carcinoid, but not definitely. And it didn't test for systemic mastocytosis, so I have to do it again. I had a brain MRI in January, which my new doctor feels was probably good enough/recent enough. Turns out I have a "large" venous malformation that was probably there since birth. It hasn't changed in size since my previous MRI. This was the first time I heard of it. I'm getting some blood work for carcinoid that was missed, and bloodwork for mastocytosis. I'm getting a colonoscopy later this month, as one of the places carcinoid or mastocytosis can live is in the GI tract. The latest round of blood work I just did today; I expect results to take 1-2 weeks. They're pretty specialized tests. And yes, it sucks that I'm in the dark, have no idea what's going on, and no way of treating the symptoms. I find myself actually hoping something so bad happens that they have to put me in hospital and figure it out. |
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Post by tenacious on Sept 3, 2016 3:12:48 GMT
I am so sorry that you are having these episodes. It is so frustrating as well as scary.
My mother began having abdominal attacks over years ago, and it took them about 20 years for them to finally diagnose her carcinoid. They kept swearing up and down that whatever it was, it wasn't cancer...until it was. It is very common with carcinoid to not get a diagnosis for many years. Luckily, doctors have become much more aware of carcinoid in the last few years, so, the fact that they are even testing for it is encouraging. It is still quite rare.
What exactly is it you are wanting to know? The symptoms that you list are classic symptoms of carcinoid syndrome, which occurs when the carcinoid tumor secretes chemicals into your system. That is not to say it IS carcinoid, just that your doctors are wise to be looking at that.
By the time my mother's carcinoid was detected, it had metastasized to her liver, a common secondary site. She had a resection 5 years ago, and they removed a major part of her liver (which regenerates--who knew?), plus her lymph nodes and gall bladder. She receives a 'chemo' shot every 28 days that suppresses further tumor growth, and although she is not as healthy as she was before cancer, she is doing quite well.
One thing I will mention, is that carcinoid tumors involve hormones. It can mess with your moods.
I attend a carcinoid support group almost every month, and I can tell you, the treatment advancements have been HUGE in the last few years, and there are many scans and therapies coming soon that will be very valuable to patients.
(hugs) to you. I am sending you the best thoughts that they will figure it out for you quickly. And, I hope it is not carcinoid, but, even if it is, you have every reason to be hopeful. My mom is doing better than we ever imagined.
Erin
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zella
Pearl Clutcher
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Post by zella on Sept 3, 2016 21:00:58 GMT
Thank you for that info, Erin. My biggest fear is that either no one will figure out what's wrong with me; or they'll figure it out but not be able to treat it. Hearing that your mom is doing well is helpful.
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