janiedelite Posted February 3, 2009 Report Share Posted February 3, 2009 Okay, I posted earlier about the abnormal EMG results but Dr. Fealey said that the EMG was essentially normal. Otherwise, TTT showed tachycardia and hypertension, valsalva showed phase 4 hypertension, catecholamines standing were over 1000 (I guess that's really high), urine sodium was really low, small bowel has very slow motility (explains the nausea), and abnormal heat sensation on my skin. So he said I have hyperadrenergic POTS, small bowel dysmotility, small fiber neuropathy. He doesn't know why my small bowel is so slow if all the other autonomic tests are normal. He added a few more labs, abdominal CT, MRI of brain, and a small bowel follow through. It sounds like I have POTS, but he explained that POTS is just a collection of disorders that cause postural tachycardia. He doesn't know why my blood vessels are behaving the way they are (arterial constriction/pernio and venous dilation). He wants to do more tests to further rule out carcinoid syndrome (the cancer my mom has).I'm happy with these results because there is nothing really life-threatening, and since my symptoms are progressive I was concerned about a progressive neurological disorder and there's not much that can be done about them! Is it crazy to be happy that I might have cancer? In my mind it's at least something that has a treatment...Dr. Fealey was originally going to send us home with strict instructions to get all of these tests done there asap but we asked him if we could just stay at Mayo since it takes so long to get in to the doctors to order the tests, schedule the tests, and he wants them done a certain way. Hope you all are doing well. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 4, 2009 Report Share Posted February 4, 2009 Good to get an update and delighted you have Dr.Fealy. He is a gem!That was a wise choice to ask to stay and finish up testing. I hope you don't have any cancer going on either. Gosh, it is too much.Your POTS symptoms are just like mine. Almost exactly. I am curious, did he give you a treatment plan?Mine is electrolytes as needed, hydration, coffee ( which is another topic),compression. and hr monitor and seat cane as needed. Basically all behavior modification. Looking to hear your update. Have a safe journey home.best regards,tearose Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 4, 2009 Author Report Share Posted February 4, 2009 Your POTS symptoms are just like mine. Almost exactly. I am curious, did he give you a treatment plan?Mine is electrolytes as needed, hydration, coffee ( which is another topic),compression. and hr monitor and seat cane as needed. Basically all behavior modification.Thanks, Tearose. I don't have a treatment plan yet. If my intestines are slow from a neuroendocrine tumor, then we'll treat for that, probably surgically. If they are slow from nerve or muscle damage, I'll see a GI doc and try prokinetics. He doesn't know how to treat my vasoconstriction caused by high catecholamines (manifested by pernio/frostbite) and simultaneous vasodilation (manifested by hot, burning pink skin). He said that any drug used to dilate or constrict doesn't select which vessels it dilates or constricts. I told him that my problem is that whatever this is, it is getting worse. Just waiting in his waiting area one of my big toes kept aching and turning white and my hubby kept having to warm my feet. Yet, my thighs, torso, and face and almost constantly flushed and warm with this burning feeling. I'm waiting to get my urinary methylhistamine results still. It looks like my neurological system is probably just fine and Dr. Fealey said that he was ordering the necessary GI or endocrine tests, but he was actually asking me what scans to order in order to detect carcinoid tumors. Which is just fine; I've been learning about carcinoid syndrome for years now in order to help my mom. He ordered an abdominal CT with and without contrast, but some carcinoid tumors can only be found with exploratory surgery.He suggested staying hydrated and wearing compression hose, but for me the compression hose are starting to exacerbate my hypertension and related symptoms (chest pain, pounding headaches, bouncing vision, etc.). He also told me that I should not eat a lot of salt since I have such labile blood pressure (running from normal range to very high). He wanted to follow-up with us after this second round of tests but unfortunately he's leaving next tuesday on vacation and they can't schedule me til 2/18! We finish with my barium swallow (to check what's blocking my intestines) Friday at noonish and are going to try to camp our in his waiting area with the hopes that he can squeeze us in.What should we do if we can't see him til 2/18??? Staying for an extra week and a half would be so costly and if they want me to stay for more tests that will mean more money and hubby's time off from work. I could stay by myself if the hotel staff can help wheel me down the long halls to Mayo. Yeesh... Still, I've learned more about what could be wrong over the last 2 weeks than I have over the last 40 appointments with local docs and specialists. If there is any hope for an answer, then I'll be happy to stay. I also have an appointment in early march with the endocrinologist who diagnosed my mom's carcinoid syndrome. She's pretty good. I just wonder if staying here will be worth all the expense and get me the answers I need. Any thoughts anyone????? Thanks, Janie Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 4, 2009 Author Report Share Posted February 4, 2009 Well I just talked with my hubby and he says even if we stayed and waited to follow-up with Dr. Fealey, if he were going to refer us to another specialty we would just have to wait again however many days or weeks. I think that if we can't see him by friday we will fly home and follow up with him on the phone on 2/18. We can always fly back again if he thinks I'd benefit from more workups under a different specialty. Just finished my third 24-hour urine test (this is retesting my sodium level because it was so low the first time). I'm starting my fourth and final jug now, this time for 5-HIAA (which detects the serotonin released by midgut carcinoid tumors). I'm so desperate and, like many of you, will do anything in order to get to the bottom of my illness. Janie Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 4, 2009 Report Share Posted February 4, 2009 thankful,If you don't know this, it is important...When you are from out-of-town you should go up to the appointment desk and explain your situation and asked to be moved up to an earlier time. They usually can see you much sooner, you just need to request it!!good luck,tearose Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 4, 2009 Author Report Share Posted February 4, 2009 thankful,If you don't know this, it is important...When you are from out-of-town you should go up to the appointment desk and explain your situation and asked to be moved up to an earlier time. They usually can see you much sooner, you just need to request it!!good luck,tearoseThanks, my hubby told them but they said it didn't make a difference. They said that we could wait for an opening in the waiting area. We've asked twice to be bumped up. janie Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 6, 2009 Author Report Share Posted February 6, 2009 I finished with my small bowel xray at 11am, and we went right to Dr. Fealey's waiting room. We waited several hours but they said he will see me at 3:00!!! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 6, 2009 Report Share Posted February 6, 2009 Hooray, you are on the home stretch now.Let us know what he says.best regards,tearose Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 7, 2009 Author Report Share Posted February 7, 2009 Well, I guess you guys aren't getting rid of me yet . My abdominal CT didn't show any tumors and my 5-HIAA is still normal, so no carcinoid syndrome! Dr. Fealey said I don't have any underlying illness, but I do have hyperadrenergic POTS. He said that the good news is that the autonomic tests that check for "central" dysautonomia were normal (I think that means that I don't have nerve damage anywhere besides the small nerves in my skin or blood vessels). He also suspects that my symptoms were post-viral, probably as a result of having mono June of 2006, and that I should get better in a few years... My small bowel xray today actually showed normal motility and no obstruction, whereas last week's motility study showed severe small bowel dysmotility. I notice that stress makes my nausea worse. We know that I have an overactive sympathetic nervous system because of my high catecholamines, and he said the sympathetic NS constricts blood flow to the intestines which is probably causing my nausea/vomitting during a flare. I didn't want to have a horrible underlying illness like lupus or cancer, but there is so little help available to help our POTS symptoms. He told me to wear my compression hose, down fluids and salt, maintain muscle tone, raise the head of my bed, the usual. He said I could try Nadilol for the sympathetic overdrive, mestinon and pyridostygmine for the pooling, or topical amytriptiline or ketamine for the skin pain. But he also encouraged me by saying that it should be fine for me to try to get pregnant . We were both glad to hear that! It would definitely be daunting to raise a child while having POTS, and he said I'd be at higher risk for pregnancy induced hypertension. But there's been so much taken away from us over the past few years, it would be such a blessing to have a child. We'll see.....My urinary methylhistamine level was normal as well as tryptase. He said that if I don't see improvement that I should return to see him in 6-12 months. It was so worth going to Mayo, and having confidence that even though I feel like I'm going to die, I'm really not ! Janie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 7, 2009 Report Share Posted February 7, 2009 Congratulations!Enjoy the "trying to get pregnant part" it ends too soon! You should feel better once you get over the first trimester's fatigue, let us know when you succeed! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 7, 2009 Author Report Share Posted February 7, 2009 Congratulations!Enjoy the "trying to get pregnant part" it ends too soon! You should feel better once you get over the first trimester's fatigue, let us know when you succeed! Ha! You bet! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted February 7, 2009 Report Share Posted February 7, 2009 Hi!I am glad it sounds like you got quite a bit of good and useful news at your appointment! I hope that some of the things he prescribed help you out! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 7, 2009 Author Report Share Posted February 7, 2009 I was just thinking about when Dr. Fealey said he believes I have the kind of POTS that occured primarily as a result of damage to the small nerves in my skin and blood vessels. I asked him if since I had norepinephrine over 1000 when standing if that categorized me as hyperadrenergic and he said "you could say that." So I've been reading on hyperadrenergic POTS and it seems that these patients' increase in heartrate and BP is due to primarily a defect in the adrenal response, and not so much an adrenal response to venous pooling. Do hyperadrenergic POTS patients have peripheral nerve damage which leads to venous pooling, which leads to an adrenal response to maintain perfustion??? I'm a little confused. Thanks Quote Link to comment Share on other sites More sharing options...
Ernie Posted February 7, 2009 Report Share Posted February 7, 2009 Hi Janie,I am really glad that you got a throrough visit at Mayo.Thanks for the update. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 8, 2009 Author Report Share Posted February 8, 2009 You bet! Thanks for reading! I thought of another question . When I was having my autonomic tests they had a beat-to-beat BP cuff on my finger. One of my complaints has been that on most days I have increased chest pain, tightness, and shortness of breath while talking. So I could watch my BP on the monitor during the tests and when I'm at rest it's normal (120's/70-80's), but I was chatting with the tech and noticed that it went to 150-160's/90's while I was saying a sentence. When I stopped it took about 20 seconds but returned to normal. As soon as I started talking again, same rise in BP. I know my catecholamines were high, so is this just another symptom of my overactive sympathetic nervous system? Has anyone else noticed this? Some days I don't even answer the phone any talking makes me feel so badly. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 27, 2009 Author Report Share Posted February 27, 2009 Okay, I just got my records in the mail from Mayo which included his notes from our last visit. Overall I'm happy with what he wrote. It is good to have the diagnosis of Orthostatic Intolerance from a credible ANS doc, especially for my disability insurance . He did address the small intestine dysmotility, saying that my bowel might have been slowed from "physiological reasons" instead of a visceral neuropathy. Then he added that because of my hyperadrenergic state I may have developed sympathetic mediated slowing of my GI tract, which he said would also explain my bouts of nausea. I'm glad that he addressed my high standing catecholamines because during the first visit's notes he diagnosed me with anxiety . Not too happy about that as my primary doc and specialists here have never called me anxious in their notes.His main suggestion for treatment was midodrine with pyridostigmine for venous pooling (midodrine 5mg po tid). So frustrating because I told him that when I took midodrine at 2.5mg tid (or any vasoconstrictor) it exacerbates my chronic frostbite and actually turned my feet blue and cold. In my last meeting with him, he said how difficult it would be to treat me because vasodilators will exacerbate my pooling while vasoconstrictors cause the opposite problem. He never addressed my chronic frostbite in his notes, even though he told me in the office that it was most likely due to high norepinephrine levels. I'm mostly just frustrated because I know that my long-term disability insurer is looking for any way to stop paying me.The low part of his notes was "although she gets increased symptoms after exercising, I suspect come of this is simply because she is deconditioned, and the little bit of exercise will eventually help her." I've been walking 1/2 a mile twice a day (or doing similar activity) for 4 weeks now and have noticed slight improvement, which I think is mostly due to my increased salt and water intake. I'm glad I went because he was very knowledgeable and I really appreciated hearing his interpretation of my results in person. If I hadn't had the last meeting with him and had just received these notes in the mail, I would have been pretty disappointed. Quote Link to comment Share on other sites More sharing options...
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