silvrwood

I guess none of the providers know the turn around time required by law to send medical records, or they think we don't and figure they, therefore, do not need to act quickly. I started by requesting that medical record noting the statistics from the hospital where the test was performed, and they are well past their 15 days - even counting time for mail to deliver. Time to pester everybody some more. Gosh, I hate that. Anyway, I have an appointment with my primary care Wednesday to ask for a referral to an autonomic specialist. She is an internal medicine physician, and as such falls in to some list I found searching for local physicians specializing in autononomic disorders. I don't know that the two really go hand in hand, though? So, what pointers can you give me to help me get the referral/care I need? And does anyone actually get better with any of the care of meds out there, or do you just trade symptoms? Does anyone else have palpitations, shortness of breath, shaking, chest pain, exhaustion, and joint pain as their primary symptoms (according to the MVP center, MVP with symptoms is typically caused by dysautonomia - http://www.mvprolapse.com/dysautonomia.html)?

Thanks! It just scared me and everyone at work, and I was surprised my kids didn't have convulsions. I do have to say I get rigors when I feel a confrontation (which includes any doctor's visit for me). But perhaps that's not the right word since it's because I tense up so bad I start shaking all over.

I'm just wondering at what point people become eligible for long term disability, having such a hard time working? I've been with my job for 5 years, and they just suggested I take some sort of leave to recoup my health, but I don't see how that will do anything more than give a temporary reprieve? Unless you can negotiate reduced enough hours, how long can you keep going a full schedule? I'm just asking those questions because I'm struggling so hard myself with just 30 hours a week.

Monday I was at work and had just finished lunch when my energy plumetted and I felt weak. This happens to me a lot about that time for weeks at a time, so I thought it was the same thing and just tried to persevere like usual. But I found myself sitting at my desk unable to concentrate, then too weak to hold up my head. I suddenly got fiendishly hot and was drenched, but couldn't pull off my blazer. I sat there with my head down for 15+ minutes waiting for someone to come close enough for me to call for help in the loudest voice I could achieve, which was naught but a whisper. When someone did come over finally, I began vomitting. Once the vomitting finished, I began convulsing. My boss called an ambulance. By the time they got there, my temperature was decreasing, and I was feeling better. My BP was about 102/60, and my heart rate in the mid 80's (usually in the low 60's). I went to the hospital where I went through several more cycles of vomitting and rigors (not convulsions after the first round.) I was diagnosed with stomach flu, rigors, dehydration; medicated and released. When they took my temperature there, it was 97.4 F. My sons also had the stomach flu with vomitting- one two days before, and one a few hours after I did. Neither of them convulsed or had rigors. Is it symptomatic of dysautonomia that my body would react to the infection that way? Perhaps the poor regulation of temperature causing it to peak high, then soar low, resulting in the convulsions and rigors?

Does the cracking sound when you move your head sound like when you twist a gooseneck lamp? That's what mine sounds like to me. So far I think the mini Cushies help the most, on a thin, memory foam pillow.

I had restless legs throughout my last pregnancy, and it was horrible! I really feel for you. I only sometimes get it now, and I find that making my back perfectly straight helps, or turning on my side and putting one leg straight and one bent. When it was really bad, turning on my side wouldn't help, but straightening my back has always alleviated it at least to some degree. I hope that does something for you.

Thanks! I am going to look for an autonomic specialist, then. Hopefully one in Ventura County, but I'll go to LA if I have to.

Thanks so much! Should I ask my primary care for a referral to another cardiologist, or to an autonomic specialist? Why do you suppose a doctor would refuse to acknowledge medical facts as presented by other experts, or the stats of his own tests?

After suffering most of my life with palpitations, exercise intolerance and chest pains, I went to a cardiologist at the age of 19 and found I had regurgitative Mitral Valve Prolapse. For the next 15 years, it stayed about the same. In addition, I've always had joint pains, random pains in various areas of my body, intermittent severe neck pain - and starting at the age of 14, intermittent weakness in my arms and/or hands. When that first happened to me, my entire left arm went dead numb for a day. At the age of 17 I began to find myself chronically fatigued. My physical condition, from all the markers the doctors look at, is great. I'm 35, 122 pounds, 5'7", vegetarian, phenomanally low cholesterol, blood pressure and heart rate, don't smoke, only occassionally drink. I jog 20 minutes 3 times a week and try to do strength training 2 days a week. My iron and sugar levels are great. But this year things took a change. I started getting dizzy and disoriented a lot. My hands felt weak a lot. At work, the office manager insisted on driving me home at one point because she was afraid to let me drive. I went to the doctor for the first time in about 4 years with a list of concerns: constant fatigue; intermittent weakness; dizziness; neck, back, hip and random pains; headaches; shaking; memory issues; palpitations... She sent me to get X-rays of my neck and hip, and blood work for thyroid and autoimmune disorders. The X-rays showed my hip was normal and my neck only has mild reversal of the something or other (I looked it up and it means it's starting to straighten.) My blood work was good, with only the alkaline phosphatase being out of range. So I went on to the cardiologist, whom I am supposed to see once a year. He, in turn had me go for an MRI of the brain, because my sister has chiari malformation, and because of the dizziness and my issues with smelling things. It showed a tiny spot of something unknown, and was considered normal. My ECHO showed the mitral valve prolapse and heavy thickening of the valve, along with thickening of another valve and trace leakage in that other valve. All normal according to the cardiologist, and no reason for me to have problems. So his response was that no one really understands why we people with mitral valve prolapse are so sensitive to normal conditions that other people experience without issue, but that there were forums where we could get support from each other. While I found that invalidating, I checked out the sites and found, according to the Mitral Valve Prolapse Center (specifically for people with mitral valve prolapse - http://www.mvprolapse.com/dysautonomia.html) that there are people with MVP who don't feel a thing, but that those who do have symptoms have dysautonomia as the cause. I ended up looking up dysautonomia and found that all the problems I had been complaining about were listed as symptoms: light headedness, generalized weakness, tremulousness; palpitations; fatigue; exercise intolerance (I have to exercise first thing in the morning, and I have to push myself hard to make it for those 20 minutes, with breaks every 5 minutes); feeling cold all the time; cognitive impairment; aching neck and shoulders; low back pain; chemical sensitivities; irregular moon cycles (even after having 2 children)... all of these things were explained in one word. All the times people have said judgementally that I should be able to do something, accusing me of being a wimp or worse - I felt like I had vindication for why I am so drained and have to push so hard to accomplish what I do, and why I still fall short of what others can do. I felt like, when my sons' friend's mom says, "Why can't you mow your 1/4 acre yard yourself?" I could say, "Well, I have dysautonomia, and it makes me tired," instead of trying to excuse myself with, "It's just more than I can do, what with the kids and work and keeping up the house and running errands and being a single mom," and getting that sallow, disapproving, accusatory look. It explained why, when I had given blood when I was 125 pounds, I had nearly blacked out after it was done, and they had to keep me for 45 minutes. Then I got sick. And things went from bad to worse. I started feeling like I was having heart attacks - where my chest would feel like it was filling with liquid, then washing down my torso and making me nauseus. I felt like my heart was barely keeping pace, and I was shaking so badly. So I went back to my cardiologist with printouts and my research and asked him about it. At first he cut me off, but when I handed him the print outs, he said he'd never heard of an association between dysautonomia and MVP. He had given me bistolic for the palpitations previously, but I felt like my heart had stopped and I was going to die. So I told him I wasn't taking that anymore. He insisted it was the right thing for me to take, and I said no. So he said he could test me for the dysautonomia, or just prescribe the medication. At first I thought of yet another doctor appointment and co-pay, more time off work.. and went for the prescription. I started feeling better about then, so I didn't take the medication figuring that I wouldn't know if it was working if I wasn't feeling bad in the first place to see a difference. But I started thinking that I should have a diagnosis one way or the other so other physicians would know how to handle my needs, and so I would, and any other part of my life could make the necessary accomodations. So I went back and asked for the tilt table test. I had read that they tilt you for up to an hour and monitor your blood pressure and heart rate. The cardiologist again insisted I should take the bistolic, and I again refused saying I felt like my heart had stopped. He ordered the test. What I hadn't read, and what he didn't tell me, was that they might hook me up to an IV and pump isopropyl in me. Well, I could see the heart rate, but not the blood pressure. I saw my heart rate between 60 & 70 bpm while lying down, and I saw it go up to 90 bpm when I was elevated. Not the 30 bpm that is a definite diagnosis. I don't know what my blood pressure was because that machine was behind me. The doctor kept the situation that way for about 20 minutes, then started 1 cc of isopropyl. I immediately began to feel bad and was clenching my teeth, but I wasn't feeling dizzy. The doctor kept the drip going, and my heart hit 190 bpm, and I went in to convulsions. The doctor asked me if I could hold out for 30 seconds more, and I, convulsing violently, shuddered, "Yeah." He finally stopped the test, and after several minutes I stopped convulsing and crying. I asked him what the test told him, and he said it told him that I had Mitral Valve Prolapse, with tendancies to dysautonomia. He again told me I should take bistolic, and I again told him I felt like it had stopped my heart and would not take it. The nurse later told me that I should get a second opinion and that the worst was that I'd have to take the test again, but I NEVER want to go through that test again. Not with the isopropyl. So, I asked for my medical records. And what the doctor wrote was that my heart rate and blood pressure remained stable, and that at the end I had started shaking. Those are both inaccurate. The logs of the stats aren't present in the medical records, and I intend to insist on getting those. So now I don't know what I should do. I know I'm not going back to that cardiologist. I think I would be a prescription fatality if I listened to him. But do I bother with the time off work, co-pays and hassle of first going to my primary care to ask for a second referral, then to another doctor for the consultation, then another test...? Or, as long as I'm feeling OK and suffering no more than the usual fatigue, just deal with it? Or, should I accept his diagnosis that I don't have dysautonomia, despite what my research shows me? (Please forgive spelling mistakes and typos - I haven't enabled the IEspell on this site yet.) Thanks for any advice or input you have to offer.