bluesky

Ernie, every single word you wrote is the truth. -Bluesky

Wow, Ernie, you have been through ****. I'm so sorry you had to go through that and I so, so understand how you must have felt. It makes me feel better though to hear your story, it really does. I was told I was depressed for years and in the last year I was told by a new primary doctor that I have fibromyalgia. I think that's the new code label for "you must be nuts, nothing's really wrong with you, get out of my office" (not that I don't think some people suffer terribly with fibromyalgia, they do). I even had that diagnosis ruled out by a rhuematologist but my doctor still mentioned it in his last referral letter to the sneering electrophysiologist I saw yesterday. So, I know exactly how it feels to be labeled and dismissed. So sorry for what you've gone through but, dang, you stuck to your guns and kept going! Good for you, that is so fabulous.

Katti, I was reading your original post and I noticed you mentioned Dr. Dolack in Seattle. I was thinking maybe I should drive up there and I was actually going to call his office today. Did you ever see him? Do you know anything more about him? I don't have any more time or money to waste so if there's anything you know about him it would be such a help if you could let me know. Thanks!

Katti - Boy am I glad to hear from you! It feels like we're the only two rattling around the pacific northwest trying to get a diagnosis. I read about the center at UCLA but thought it was odd that I couldn't find much reference to actual patients going there. Everyone seems to talk mostly about the mayo clinics. Please, please, please let me know how your appointment goes and if it's any help to you at all. If you can tell me good things, I may very well be flying down right behind you. When you first made the appointment how far out did you have to wait? Thank you, thank you for your help.

Hi, I'm trying to find a doctor in Portland, OR in my desperate attempt to get a diagnosis. I've tried a cardiologist and an electrophysiologist who both knew nothing about POTS and seemed to think the whole thing was ridiculous. Does anybody know of a good doctor within driving distance of me? I would so appreciate any help!!! Thanks.

Thanks for your reply, jump, that was full of good information. Although I've never fainted I can walk around all day feeling like I'm on the verge of fainting. What you say about a lot of false negatives makes sense. Thanks! Jump - I've tried 2 cardiologists - one was an electrophysiologist. My pcp isn't any help at all. Your suggestion about asking if anyone knows any doctors locally is a really good one. I tried asking on another site and wasn't able to get any help, but hey maybe somebody here knows! I'm going to post a new topic for that now. Thanks for your reply, it's so good to get some help.

Cat-Lady, I'm still new to all this and trying to figure things out so sorry if this is a silly question but when you say 120ish in the am or 130 or 150-160 do you mean as you move around trying to get ready in the morning? Or just upon waking? I'm trying to get a sense of what is a normal hr or abnormal hr for daily activities. I easily go up to 135 just slowly wiping down the kitchen counter. It doesn't feel good so I'm assuming that's too high. Is that right? My brain is really foggy right now so I hope I'm making sense!! Thanks.

Ernie - thanks for your reply. You have such a great family! I always wanted a big, loving family like yours. They just sound like wonderful people. Can I ask you how you managed to find a doctor who could diagnose you? I'm not having any luck at all. I called around for an electrophysiologist who was familiar with POTS and I saw him today. He was very arrogant and everything he said about POTS was wrong - that it is only a diagnosis of exclusion like chronic fatigue, there is no diagnostic test, there is no treatment and nobody ever gets better. Really, he was smirking and awful. Where do other people find knowledgeable doctors? Kansasgirl8605 - wow, that's good to know about needing a diagnosis. The awful cardiologist I saw today said he'd schedule me for a ttt even though he clearly thought I was crazy. I think I needed to hear from you that I should stop worrying about the results and just get the thing done. I guess I'm just so desperate for a diagnosis - I get full of despair when a test comes back negative even for a horrible disease like lupus or some type of tumor. But you're right, I just need to get one done. Thanks so much for your reply!

I am new and just posted an introduction but I wanted to tell you that I *totally* understand your feelings and your position. I've been fighting doctors for six years. I first became really sick about 4 months after my husband died of cancer and I could not, could not, could not get my doctors to think of anything past depression. I wasn't depressed! I was desperately, desperately sick. I've been looking for a doctor who is really interested in helping me since. So far it's been 9 failures and one doctor who is trying but he's a nephrologist and it's out of his sphere. I've thought recently of giving up and just taking the articles I've read on POTS and asking my regular doc to try medications. I don't even have a diagnosis so I'd just be guessing. But it's better than living out of a car with my kids because I can't function and can't work. Anyway, please don't be discouraged because so many doctors don't believe you or know what to do with you. When my husband got cancer - which was a tumor the size of a football in his chest, mind you - it took him a year to get a diagnosis. Apparently, these things aren't always easy to see on CT scans or MRI's, at least tehy weren't in 2000. At one point his cardiologist took me aside and told me she thought he was faking it to get disability. I was frantic because he was clearly very, very sick. Literally 4 weeks later when he finally was diagnosed and finally saw the oncologist, the oncologist took one look at him and said to me, "he's got less than three weeks to live unless we can guess the right chemo and it happens to work". Don't worry - you don't have cancer! But I just tell this story to show that doctors can be so wrong minded and so stubborn. If their tests tell them everything's "normal" it makes them blind to what's sitting right in front of them. Anyway, I wanted you to know that I understand what you're feeling. I know it's easy to be discouraged. Try to just keep going no matter what the doctors say - that's what I'm trying to say to myself too.

Hi Everyone, I'm new here and like everyone else I have a long story -but I'll try to make it as short as possible. I apologize ahead of time if this post is a bit long and thank you to anyone who has the patience to read it through. Six years ago I became very, very sick and was pretty much bedridden and unable to function for almost a year. I never recovered full functioning and about 1/4 of the time have had flare-ups and became very sick again. Last December 26th I had another flare-up and this time it stuck around and I'm still trying to crawl back to minimal functioning. I am very scared and am not able to get a diagnosis or any help. In the meantime I am a widown with 2 children to support and have had to abandon grad school and desperately need to work but can't. I think I have a lot of symptoms that are very much like POTS - tachycardia on standing and exertion - the worst is taking a shower which can raise my hr to 150 and wipe me out for days, dizziness, almost-fainting, deliriousness, high blood pressure (although that's new-ish), a horrible weak, shaky, gnawing feeling like I haven't eat in several days that is absolutely debilitating, muscle twitches, electric-like shocks that hurt where they end (I hope that makes sense), headaches, horrible brain fog and loss of memory, absolutely no stamina, and recently my knee and left leg have gone numb, the muscle above my knee becomes extremely tight and - just yesterday - I twice had a hard time moving my right hand. I'm sure I'm forgetting other symptoms - there seem to be so many, but that's the basic picture. By the way, POTS is the only disease/syndrome I've come across where people also suffer from that weak, hypoglycemia feeling which really makes me hope that maybe I'm on the right track. Here's my question: I've tried doing an amatuerish at-home tilt table type test where I check my hr after lying down for a few minutes and then while standing. Often my hr will jump within 10 minutes, more often in the morning than in the evening. First thing in the morning it will often go from 88 to 125 - but sometimes not. Often during the day, particularly if I'm feeling sick it will go from 95-100ish to 120ish, but again, sometimes not. I wish I had paid more attention when I was really, really sick but I didn't know enough about POTS. I can't find a cardiologist who knows anything about dysautonomia locally - in fact I've had a couple of terrible experiences. I'm desperate for a diagnosis, but I'm broke and would have to put a trip to Mayo or anywhere else on credit cards-and I can't work and we are living off my kids' social security. What I worry about is what if my guess is wrong? Has anyone ever had a phone consultation with a specialist before they go to the huge expense of actually going there? I've considered just throwing myself at Mayo and hoping they could diagnose me in general without specifically asking for one of the dysautonomia specialists but I have heard a lot of people haven't had good experiences with that. One more question - has anyone taken a ttt when they were very sick and it showed POTS but when they were feeling better it didn't? I feel like that is what would happen to me - the ttt wouldn't always show hr>30 or 120 absolutely every time, every day. I just have some very terrible days and some somewhat better days when my heart isn't so whacky. Okay, this one last thing - I think my mother suffered from something very much like POTS. Does anybody have a family member with it too? She was always completely physically overwhelmed and exhausted. She lived a miserable existence because almost everyone in her family and my father blamed her for not being able to function. I'm sure she blamed herself too. To be honest, I live in fear of repeating her life. I'm so happy to join this forum and find other people who at least can understand what it is to struggle through every single day. Thanks for reading this - I know it's long - and thanks for your help!!!