Dysautonomia Would Be So Much Easier With A Medical Degree

[Chrissy]

It will be 6 years in December since I first got sick, 5 1/2 since my diagnosis. I learned early on that you have to be your own advocate, because you are the only one who really understands/feels what's going on in your body. I have bounced all around from doctor to doctor over the years. Mostly because they get to a point where they don't know what to do with me and refuse to see me anymore, partly because I get tired of their attitudes and doubting me. I've probably seen every type specialist there is for one reason or another. When the doctors can't explain what's going on with me, I usually don't push the issue, thinking it must not be life threatening, and then I learn to deal with it. Just accept it as a new part of my life. I currently have a dysautonomia doctor (who wants to refer me to Vanderbilt cause I'm getting too complicated), a cushings specialist (who insists I'm cured even though my symptoms are much worse and my hormones are far from balanced), a local cardiologist (who has been a great help, listening to all my concerns and new symptoms and telling me what kind of doctor I need to see for what), a neurologist (actually I'm in between neuros), a GI doctor (also changing docs because the last guy said I became too complicated), obgyn (for women issues and to try to control my hormones by controling my irratic periods with birth control), ENT, an internist/pcp, and it was suggested I get a local endocrinologist. They all have a special diet they want me on and their own idea of how I should exercise and for how long. None of them communicate with each other, so I'm left to figure out who to listen to and how to manage my life (how far to push my limits, how to cope when I crash, etc). My internist/pcp, who I thought was supposed to help me figure out a plan of action, is very little help. When I see him, he asks about any new developments in my conditions, but never comments on any of them, then address the reason for the visit then sends me on my way. If it wasn't for this forum and the advice I find here, I don't know where I'd be. But even still I'm finding that its getting to a point where I can't manage all the issues myself, I've become too complicate. Most days I can barely think straight let alone try to understand medical issues. Am I alone is feeling like I have to figure this out for myself? I know all patients are different and I have two "rare" misunderstood conditions, but if the "professionals" give up so quickly, how is a 23 year old with a 10th grade education supposed to figure it out? Anyway I'm tired, with a migraine who is probably having her biannual nervous break down. Thanks anyway.

[MightyMouse]

Hi Chrissy, hugs to you. I don't know if this will make you feel better or worse, but I know a few medical doctors who have dysautonomia and I can tell you that they've had their own battles to get adequate medical care, to find even one doctor willing to treat them long term and/or believe them when things get bad. Some have had to travel thousands of miles to find adequate treatment. You would think it would be easier since they know the system, the lingo, etc., but that doesn't always mean they will be immune to the same pitfalls the rest of us go through.

Hang in there as best you can. Nina

[KLK1305]

Chrissy, I am sending lots of hugs your way!!! I know EXACTLY how you feel. I too am a 23yo that has been self taught in school since 9-10th grade level and I also have pretty much been left to figuring a lot of things out on my own with these illnesses because I am always too complicated for doctors. I know how horrible and frustrated and overwhelmed you feel. Know that you are not alone. The feeling of being washed out both physically and mentally is so hard to handle sometimes. <HUGS> and hang in there! ~Krissy

[Chrissy]

Thanks for the replies. I know all dysautonomia patients have the same struggles. I just know from the very beginning my first dysautonomia doctor and the forums (dyna and dinet) always stressed how important a good medical team is. Well my team *****. I already had/have the best doctors in their departments on my local team and they aren't any help. In fact when I developed my "tic" and my neurologist at the time was so rude and uneducated, I asked my cardiologist who he would recommend and he said I should see the best in town. The sad part was I'd already seen that guy and when he couldn't figure out the migraines and "cure" dysautonomia by finding chiari malformation, he started doubting me and stopped listening to me. It just not as easy as it used to be to bounce from doctor to doctor looking for someone who understands, even just a little bit. Both of my parents have developed medical conditions of their own so our calender is pretty much full til the end of the year.

[delphicdragon]

I'm working on a doctorate in Biology and have a degree in BioChemistry. Neither of those things have made the diagnosis of POTS / Dysautonomia any easier. Yes, I understand more of the lingo, but doctors almost always assume that I am making things up because I "know too much" and are often offended because I'm using "their" language.

Endocrinologists I have had a lot of luck with, but I will only see doctors who want to treat me and who don't assume that I'm faking it. Surprised you aren't seeing one anyway with the Cushing's diagnosis. Have you had your pituitary MRIed? I have a pituitary microadenoma and those things can really screw with your hormones! There is a surgical cure for Cushings (if you have the form that is caused by a pituitary tumor) and I've been told that can help with POTS too. Just something to look into.

Sending you hugs too. Your education isn't the issue, it's the doctors lack of communication in treating you. Unfortunately if you have anything more complicated than a paper cut you need a team of doctors and often they don't speak to each other (OR TO YOU!!) Keep on being your own advocate.

Sara

[Chrissy]

I'm working on a doctorate in Biology and have a degree in BioChemistry. Neither of those things have made the diagnosis of POTS / Dysautonomia any easier. Yes, I understand more of the lingo, but doctors almost always assume that I am making things up because I "know too much" and are often offended because I'm using "their" language.

Endocrinologists I have had a lot of luck with, but I will only see doctors who want to treat me and who don't assume that I'm faking it. Surprised you aren't seeing one anyway with the Cushing's diagnosis. Have you had your pituitary MRIed? I have a pituitary microadenoma and those things can really screw with your hormones! There is a surgical cure for Cushings (if you have the form that is caused by a pituitary tumor) and I've been told that can help with POTS too. Just something to look into.

Sending you hugs too. Your education isn't the issue, it's the doctors lack of communication in treating you. Unfortunately if you have anything more complicated than a paper cut you need a team of doctors and often they don't speak to each other (OR TO YOU!!) Keep on being your own advocate.

Sara

From the very beginning, every doctor I saw suspected Cushings and ran the tests, they came back normal so they dropped the ball. I tried two local endocrinologists to figure out if not Cushings then what, but they just got themselves more confused and became butts. Then I was referred to Vanderbilt endocrine department, cause they would get to the bottom of it no matter what, wrong they were just like the guys at home. Ran a few tests then dropped the ball. Finally I found a doctor out of Ky who specialized in the difficult Cushings cases. He knew based off my symptoms that I had Cushings, he just had to prove it. He did a CT of the abdomin and a MRI of the head, then he ran loads of labs (blood, urine, saliva) over a 6 month period. On the follow up visit he said my MRI was abnormal and he was referring me to the best in Houston, TX. But there was a chance that we'd still have to remove the adrenal glands, because I went so long untreated. I had my surgery in April. They removed alot of tumorous tissue from my pituitary. They were excited because most patients have suspicious tissue removed and none of it turns out to be tumorous, but their symptoms go away. I had a majority of the tissue be tumorous, so they had high hopes for my recovery. On the 6 month follow up with the surgeon, he was disappointed that my symptoms seemed to have gotten worse and said that it is really possible I would need the adrenals out. When I had my follow up appt with the Cushings specialist, he ignored the continued worsening of symptoms and said the cortisol was borderline normal and that I needed to see my obgyn about birth control to regulate my periods and help balance my hormones. He'll do yearly visits to recheck my cortisol, but he was pretty much done. But my cardiologist said I need to see a local endocrinologist to really evaluate my hormones. All of my doctor knew fixing the Cushings would make my dysautonomia worse, but they had a gameplan to handle it.

[jem15]

I TOTALLY feel your frustration! Ha, it's like the post was written by me. I don't have any helpful advice, but unfortunately share the same experiences and it's sooo frustrating! So just letting you know i feel your pain. I have to be my own doctor and I'm sick of it, and feel I can't do it for much longer. I have so much on the line though so it's scary, and as tired as I am, as much as i want to give up, i cant yet, cause then I know nothing will happen. I try to get the drs to talk, and they won't, and youre right, you as the patient are left to weed through it all, figure out who to see, what to do, etc.. even some of my doctors agree I'm my own internist.. it's crazy. they seriously should be paying us! then i wouldnt have to worry bout disability;-)

[friday7]

It will be 6 years in December since I first got sick, 5 1/2 since my diagnosis. I learned early on that you have to be your own advocate, because you are the only one who really understands/feels what's going on in your body. I have bounced all around from doctor to doctor over the years. Mostly because they get to a point where they don't know what to do with me and refuse to see me anymore, partly because I get tired of their attitudes and doubting me. I've probably seen every type specialist there is for one reason or another. When the doctors can't explain what's going on with me, I usually don't push the issue, thinking it must not be life threatening, and then I learn to deal with it. Just accept it as a new part of my life. I currently have a dysautonomia doctor (who wants to refer me to Vanderbilt cause I'm getting too complicated), a cushings specialist (who insists I'm cured even though my symptoms are much worse and my hormones are far from balanced), a local cardiologist (who has been a great help, listening to all my concerns and new symptoms and telling me what kind of doctor I need to see for what), a neurologist (actually I'm in between neuros), a GI doctor (also changing docs because the last guy said I became too complicated), obgyn (for women issues and to try to control my hormones by controling my irratic periods with birth control), ENT, an internist/pcp, and it was suggested I get a local endocrinologist. They all have a special diet they want me on and their own idea of how I should exercise and for how long. None of them communicate with each other, so I'm left to figure out who to listen to and how to manage my life (how far to push my limits, how to cope when I crash, etc). My internist/pcp, who I thought was supposed to help me figure out a plan of action, is very little help. When I see him, he asks about any new developments in my conditions, but never comments on any of them, then address the reason for the visit then sends me on my way. If it wasn't for this forum and the advice I find here, I don't know where I'd be. But even still I'm finding that its getting to a point where I can't manage all the issues myself, I've become too complicate. Most days I can barely think straight let alone try to understand medical issues. Am I alone is feeling like I have to figure this out for myself? I know all patients are different and I have two "rare" misunderstood conditions, but if the "professionals" give up so quickly, how is a 23 year old with a 10th grade education supposed to figure it out? Anyway I'm tired, with a migraine who is probably having her biannual nervous break down. Thanks anyway.

Wow..you took the words right out or my mouth. I am so sick of trying to figure out things for myself. It's especially hard when you get brain fog all of the time.

I think what frustrates me most, is the lack of caring. I think that should be a big part of what a doctor should be. And also the lack of communication between doctors. It's really ridiculous when you are seeing all of these specialists and none of them communicate with each other. I once had a GP that asked for one of my specialists number..I felt hope...but she never called them.

It'd be so much easier if you had a complicated issue and instead of being ignored, passed from doctor to doctor, not listened to etc. IF they would take the time to listen and work as a team.

I guess having a degree ,as the others say , you might still get some of the same problems. But I really do wish I could take a class to educate myself more in all of this. I do think someone that has a degree might get a little more respect than people that say "I read this on the internet".

I'm just getting tired of having to educate myself. My mind is too foggy and I just want to give up already. And I don't like that. But I'm just tired of it all.

A while back, when I had a little money , I used to see a holistic doctor. She was very nice and it was almost a therapy session when I saw her. Not just because she was understanding but because if I brought something up medically , she'd listen! And then she'd discuss it with me. One time in particular I brought in some info and we talked about it and tried it..And it helped me.

She did help me physically but I think what helped most is that she treated me so well as a person. I wish more doctors were like that. Unfortunately I can't afford to see her anymore because of the insurance. But It would help so much if some doctors would realize that when you have a chronic illness you start to really know your body. You know not only from instinct but from experience.

[Brye]

I'm a RN and sometimes that backfires. They assume you know all and I had one doctor who almost expected me to treat myself. I would go to an appointment and offer a suggestion and his favorite response was "we can do that if you want". It made me wonder what I was paying him for. Pacemaker, new beta blocker ... "if you want" Who wants a pacemaker? I wanted him to use his experience and offer some suggestions. On to the next doctor!!

Brye

[Guest tearose]

You are so right. If we had been formally educated we would have a degree to use and would not have spent the thousands of dollars and hours doing our own research!

We can try to see how many credit hours you have accumulated in doing your own research and maybe get a DINET certificate for you...or how about a tee shirt?

More seriously,

Many of us are fortunate to have been able to advocate for ourselves or have a helper to do so. I have no question that I would have been very much more ill if I had not asked important questions, not had second opinions or just followed along blindly "trusting" all that was suggested.

To answer your question, no, you are not alone in feeling like you must do a lot yourself to maintain a good balance. I too have had to leave a few doctors along the journey back to better health.

The benefit to going to one of the larger ANS testing and diagnosis centers is to help you figure out as much about your body challenges and to have expert input as you develop an individual treatment plan. You may want to consider going to one.

meanwhile,

Hang in there and keep doing what you are doing.