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Hi everyone,
I am asking for some advice as I just had a very interesting (ie: frustrating) conversation with my doctor.
I have had some really strange symptoms over the past month – GI, constant lightheadedness, bladder, vision, balance and walking issues. For a time I had a foot drop. I have had a very hard time getting responsive care from my doctors at Kaiser. For weeks I was told I had vertigo, then migraine. A few nurses and techs have mentioned things to me about my heart rate and POTS. I did some at home tests and my beats are over 30 from sitting to standing, but under 120 (about 118). I have had a paramedic friend help me to make sure I am taking accurate readings. I’m pretty sure I have POTS.
1. My doctor told me I don’t have POTS because two weeks ago a nurse took my vitals laying down, seated, and standing. My doctor was not in the room, and the nurse took my vitals immediately after standing. I asked him why she didn’t wait 10 minutes, and he said, “I don’t think you have to wait 10 minutes.”
2. I asked my doctor if my autonomic nervous system had been checked. His response, “there’s no way to check for that.”
3. He tells me all of my tests were normal, but does not show me the test or reports. I requested my medical record and there were three notes on my EKG that I had a friend (and ECG tech) explain. She told me they were not normal. One was an ecptoic heartbeat.
4. He told me that a foot drop cannot be explained by POTS and that the autonomic nervous system has nothing to do with bladder retention.
His consensus was that he talked to five other doctors about me and they think I have a “conversion disorder.” I asked him if he had worked with patients with conversion disorderd before, and he told me I was the first. I had no triggering stressful event, but he has referred me to psychiatry.
I feel very dismissed and pigeon-holed. I have struggled with depression in my past and though I have been well for five years, I feel I will continue to be judged by doctors because I have been treated for mental illness. I don’t attach the same stigma to mental illness that some people do, but I know what psychiatric disorders feel like, and this is not it.
Has anyone else been through this? I have asked to be tilt-table tested and asked for a referral from neurology so I can get a second opinion at Stanford. A friend in neurology at Stanford has recommended Dr. Safwan Jaradeh because he is an expert in autonomic disorders.
Thanks for listening. 🙂
hi i have been having problems my whole life and have been treated just like you. i have an apt today with a cardiologist thats suppose to be an expert on POTS. monday i see a geneticists for hypermobility eds. one of the best things i have found is a local support group for eds and ask the people at the meeting who their drs are, that have helped them the most and i’m going to see these drs and are hoping they will help me too. waiting is the worse thing b/c you feel so crappy and just want to feel better. depression is part of this. watch dr diana’s video on depression it really helped me. others don’t understand how hard it is for us just to go to the dr , they can and have treated us so badly-my depression might be really bad tomorrow. i can feel it today just by going to a new dr and lying everything on the line and he could treat me like it’s all in my head. i hope today is a good day! best of luck to you!
Hi robynne, This is so frustrating!! I, too, had to FIGHT to be diagnosed, even though I knew what it was! I even waited 9 months to see a “POTS specialist”, and he refused to believe I could have POTS, and didn’t even put me on a tilt table (which is MUCH more accurate than what your doctor did — incorrectly — for you). Yours did what we call a ‘poor man’s tilt table’. I finally just went across the country with a letter from my neurologist stating that he believed I had POTS (he was a dear to do that — he didn’t even know what POTS was at the time!). Thank Heavens, they put me on a TT, and I was what they called a “flaming case” of hyperadrenergic POTS. But then, when I was certain I had EDS (my POTS was no better after a year, and no treatments were effective), I had to ARGUE with the doctor about it at Mayo! Really?! Finally, I told him that I needed to know for my kids. He “let me” see the geneticist who believed me “as soon as she shook my hand” she told me later. Honestly, in some areas of the country, it is easier, and doctors seem more aware of this condition. But I felt like I lived in a ghost town of intelligence! Honestly, every step of my journey has been a struggle and a battle of some sort. My advice to you would be to keep on keeping on! Dab’s advice to ask folks in your local support groups for “good” doctors is a good one. “Good” doctors are ones that are willing to think outside the box, and who don’t roll their eyes when you pull out info from the internet! I was told numerous times that my illness was stress related, or psychological and that just fueled my fire for answers. A TTT is an objective measure, as is a measure of catecholamines for the hyperadrenergic form. Most of my work is trying to point to objective findings that doctors sometimes ignore (our abnormal fingernails, our urine, our rashes, just to name a few). We have a thread here called “good doctors” that may help you. On other “traditional” forums, I see the “traditional” doctors (most of whom tend to recommend the same things — salt, florinef, midodrine, etc). Those symptomatic measures can help many of us, but for those of us who do not respond, my experience has been that they just say it louder, “SALT, FLORINEF, MIDODRINE — DRINK MORE WATER” 😉 ha. If I can shorten your journey, and the journey of so many others, I’d like to try to do that! Please keep in contact, as studies and treatment from my team have begun! Hang in, my friend.
hi i have been having problems my whole life and have been treated just like you. i have an apt today with a cardiologist thats suppose to be an expert on POTS. monday i see a geneticists for hypermobility eds. one of the best things i have found is a local support group for eds and ask the people at the meeting who their drs are, that have helped them the most and i’m going to see these drs and are hoping they will help me too. waiting is the worse thing b/c you feel so crappy and just want to feel better. depression is part of this. watch dr diana’s video on depression it really helped me. others don’t understand how hard it is for us just to go to the dr , they can and have treated us so badly-my depression might be really bad tomorrow. i can feel it today just by going to a new dr and lying everything on the line and he could treat me like it’s all in my head. i hope today is a good day! best of luck to you!
Dab, you are so right! There is no way someone without this condition can understand the urgency of our suffering. I told my husband that I was worse about every 4 hours or so at one point, yet we can be treated just like a routine sore throat patient! The lack of validation of our suffering, the lack of help, and the lack of compassion is the “trifecta” for suicide ideation. I’d like to fast-track the learning curve for physicians, if possible. We must always hang on to hope, though. Some progress IS being made, and the internet has allowed patients to compare notes like no other time before in history. That will help us tremendously. Big hug…
hi, i saw the cardiologist yesterday. my husband and i liked him? i told him things and kind of acted dumb and he would finish my sentenced correctly (i was testing him to see if i thought he even knew anything about POTS or EDS). i’m on a 24 hr heart monitor, then have the king of hearts on for a month. i told him i found him from the dinet.org site for good dr. in your area and other patients said he was really good with patients that were told it was all in your head and he said i wish they would take me off that site because the cleveland clinic now is opening a neuro-electrophysical dept. for pots patients so he is taking his interests in another direction. so i said then you don’t want me and he said oh no it’s ok i can help you????? i started out in neurology at the cleveland clinic before i knew about dr diana or dinet.org or my local eds chapter, so why didn’t the neuro send me to the electrophysical dept which is part of her dept???? she told me after asking her 3 different questions that i need a cardiologist!! so i go to a cardiologist and he says what he said. i’ve been working on this since feb and i am not any farther than 20 yrs ago. i can not get anyone to give me diamox??
i have also been having alot of problems with my stomach-delayed gastric emptying, i get kidney stones but this was different so dr sent me for ct scan and they found spot an pancreas that can not be ruled out as neoplasm, fatty liver! i have never drank a drop of liquor in my whole life why would i have a fatty liver?? now more test i hate this. see this is what we go through. i have 4 kids that all show signs and i don’t even want to think about it. it sounds like i’m “debbie downer” today—sorry.Update!
My neurologist at Kaiser has agreed to give me a referral to an outside doctor. (This means my insurance will cover it). I really didn’t think this was going to happen, because my doctors have been so uninterested/unconcerned with me. I am finally making some traction and even though I’m not there yet, this small victory has given me new hope of getting a correct diagnosis and HELP for my symptoms.
I know a neurologist in residency at Stanford (previously at UCSF) and asked her if any of her colleagues were experienced with POTS and autonomic disorders. She recommended one neurologist, Dr. Safwan Jaradeh, MD. at Stanford.
http://med.stanford.edu/profiles/neurology/frdActionServlet?choiceId=facProfile&fid=25081
The referal process takes a few days, and then there’s getting in for the appointment with Dr. Jaradeh, but the ball is rolling!
hi, … i told him i found him from the dinet.org site for good dr. in your area… so i go to a cardiologist and he says what he said. i’ve been working on this since feb and i am not any farther than 20 yrs ago…
… i can not get anyone to give me diamox??
i have also been having alot of problems with my stomach-delayed gastric emptying, i get kidney stones but this was different so dr sent me for ct scan and they found spot an pancreas that can not be ruled out as neoplasm, fatty liver! i have never drank a drop of liquor in my whole life why would i have a fatty liver?? now more test i hate this. see this is what we go through. i have 4 kids that all show signs and i don’t even want to think about it. it sounds like i’m “debbie downer” today—sorry.Hi Dab! You are not a Debbie-Downer! You express what most of us have been dealing with, which is incredibly frustrating and demeaning. ;( Now for some good news. Do you have symptoms of hydrocephalus? Did you already complete the Symptoms Checklist? (sorry if this is a repeat question!). I am in Texas, and I now have a specialist with me who can prescribe Diamox as needed, and we can do much of the follow-up long-distance if needed. Cool? You can reach me at Clinical_Trials@Prettyill.com. I’d love to have you come in — not only to help you, but you’d be helping so many others, too! We are performing some (top-secret!) high-tech testing to find your hydrocephalus (I can see how this is often missed by most doctors). We are self-funding this (Heaven help me), but will publish this so that all patients will have this peer-reviewed article to bring to their doctors. So if you can come, great (or if you know of anyone else who may need help, please let them know!). As far as your other symptoms, I am pulling together the team and for treatment to take care of these issues of organ dysfunction. This treatment is now patented, and the science speaks for itself. So, don’t go to far, OK? Oh, as an aside — sometimes it can be tough being a “girl” and a therapeutic optometrist working in the often (sadly) “good ‘ol boys” world. There are some tremendous doctors out there, but there are some who are not so tremendous, and are not excited to see me playing in their sand pile. 😉 I’ll look forward to hearing from you, and hopefully we can start to push things in the positive direction for you, OK? Gentle hugs… (
hi i would love to find out more about coming to see you. i think i have javascript but couldn’t see your e-mail? or do i look some place else? i sent my symptom’s list, drug list and medical problem list to you yesterday if you haven’t received it let me know i’ll send it again.
hi i would love to find out more about coming to see you. i think i have javascript but couldn’t see your e-mail? or do i look some place else? i sent my symptom’s list, drug list and medical problem list to you yesterday if you haven’t received it let me know i’ll send it again.
Hi Dab, Thanks for your patience! I am over 700 emails behind as I’m meeting with attorneys and doctors (and a few patients) most all day, every day! Yeesh. Let me see if I can find it, and I’ll email you right back, OK?
hi i would love to find out more about coming to see you. i think i have javascript but couldn’t see your e-mail? or do i look some place else? i sent my symptom’s list, drug list and medical problem list to you yesterday if you haven’t received it let me know i’ll send it again.
Hi Dab, Thanks for your patience! I am over 700 emails behind as I’m meeting with attorneys and doctors (and a few patients) most all day, every day! Yeesh. Let me see if I can find it, and I’ll email you right back, OK?
Sent you an email, my friend. I just need your help with the blanks on the Symptoms Checklist. Thanks! 😉
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