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Frustration With Doctors


leea190
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Hello everyone,

So I've had POTS since I was 16 and I'm 22 now. It started after I had mono. At first I thought it was still the mono bothering me but the doctors said it wasn't and the mono was gone. So I kept everything to myself and became good at hiding my episodes and acting normal during them. The doctors just said I was faking it to get attention so I didn't want people to keep thinking that. It wasn't till the summer after my sophomore year of college. It was the day after I came home. I did my usual morning routine. I sat up in bed for a few minutes, stood up slowly, then stood there for a few minutes to make sure I was fine. Then I started walking to the bathroom and the next thing I know I'm in the hospital with a concussion. According to my mom I said "oh god" before I went down but I don't remember. That was a weird episode for me. I usually have some sort of warning but I don't remember. That's when they finally sent me to a cardiologist in my area that specializes in POTS and syncope. But I went out of town for college and the hospital there was really only use to drunken and pregnant college students. So when I ended up fainting on a set of stairs in the library and breaking my ankle the doctors blamed it on me being drunk on a Tuesday morning when I was working. I was so offended especially when it states in my records that I have POTS but when I mentioned it to these doctors they thought I was making it up because they never heard of it. Once they found out I wasn't drinking they gave me a pregnancy test thinking it was that which made me even more offended. I just wish these doctors did their research.

Now, 2 of these girls I know have similar problems. They've been to tons of doctors but no one will tell them anything. I don't want to play doctor since I have no medical degree but I gave them all this information on POTS, syncope, and doctors in the area. But they're both afraid to go see anyone because these doctors keep telling them they're faking it. I feel so bad for these girls. I know how they feel. They're upset and frustrated then they start thinking maybe it is psychological and you are faking it so you won't tell anyone and then it just gets worse and worse.

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I am so sorry. It is bad enough to be ill and to be told you are making it up, drunk.... just shameful! I can't beleive so many doctors are unwilling to learn about things they do not know about. There are some good doctors so that is good, just not enough. I am always shocked how most docs do not know how supplements help so much. But, I have a good doctor so I just hope to keep improving. I guess you will have to find another doctor while you are at college. It is dangerous to have useless ones. I am really sorry.

Maybe if doctors could simply learn to GOOGLE.

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leea-

How frustrating!!! I am so sorry that you were so mistreated- really makes me worry for my son who starts attending college next year. I believe that you weren't drunk at work :angry:

How wonderful that you are trying to help your friends. The last time I saw Dr. Peter Rowe at Hopkins, I told him I saw signs in so many people. He smiled and nodded. I asked him if this was under diagnosed & he wholeheartedly agreed. You are very astute.

I wouldn't waste your time on your university's health center. If your friends truly have dysautonomia, it's best to see a doctor that specializes in this. Refer your friends to this website; there's a wealth of information and support here.

You are a hero for pushing through, attending school, and working as well. I'm beyond proud of you and I believe you.

Hugs-

Julie

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I actually graduated from college. I'm still surprised I survived till the end through all the stress and no sleep. But now I'm back home and I see my cardiologist twice a year. He's so great. I wish I could go to him for everything. He's so helpful and really listens and gets it. Wish there were more doctors out there

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Thank you! I hope your son finds better luck with doctors. I went to a school that was in the middle of nowhere with only 4 colleges in a 10 mile radius so doctors there were only use to typical college ailments.

But yeah I've noticed it in so many people too but I feel more for these girls because they got it in their heads that they might be faking it. But I will definitely refer them here. This is an amazing site!

Thank you! I can't believe how I made it to graduation. I was always so tired and no one there to understand. My doctor got many of phone calls from me my final semester haha! But I think this past summer was the worst. It was too hot where I could not at all get out of bed without having an episode and had one too many job rejections. But fall came and I'm working not in my field just a minimum wage job where I'm on my feet so much but its a paycheck. I put in for a few desk jobs in my field so I hope I get those because standing on my feet so much while not eating for 5hrs at a time (I'm also hypoglycemic ) is finally starting to get to me. I've been even more tired and I go into shaking fits and blackout almost constantly now. I can't even drive anymore. This is such a horrible problem to have. I would never wish this on anyone

Edited by Rachel
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I always hope that i am the only one whit bad luck when it comes to docs... But i know i am not.. I was hoping that things would change.. I got my diagnose back in 98, i really hoped that things would change over the years. Spesialy in the usa, where there is a large amount of docs whit easy acsess to other docs whit the rigth knowlege..

As one of u said, if only the docs learned to google....... It makes me sad really.... When got my diagnose i hoped finaly i would gett some help and understanding. That was not the case. I know that in my country we are so few people that the docs dont se much weird stuff. And we also have a smaler medical comunety also. But they do have internett here too.. But dont seem to know how to use it here either..

But here the diagnose of me (thats what cfs is called here) is abnormal high. And the patient getting that diagnose is badly treated by the docs too. One thing they have is a strong sort of me union of patiens. And it seems to bee very hard fronts beetween the me patiens and most docs. Thats no way to make people healtyer.. And what if the docs things its all in their minds, they should still help. I dont think anyone whants to lay in a dark room all the time ust cause they are lazy... Ofcourse that is the extrem cases.

i have a realtive whit me, She had some thyriod issus. But even after they cleard she was very fatugied. She is abel to do more than many in here good periods, like travel, skiing, hiking etc etc. But then she needs to stay on the sofa for a while after. The docs didnt really do many test on here at all. ust the tyroid thing and normal blood work...

So my feeling is that there is many here whit treatbel illnesses that dont gett treatment. Ust like there is many resons for pots i think there is many resons for me.... The docs here ust seems to think that that type of patiens are attension seekers, weak minded or after medical dissapility...

Yes we have a nice welfear system here, but as young on welfare, well if it wherent for my boyfriend i would be poor (living here is very expensive, very). In does group that have been working for years, there i think and know there are people angling for diability, cause they gett much more. And then you have the younger once that works on the side illigaly....

But this was off the point really....

I am ust sad that so many docs all ower the world is so conservative, only seek the so called common sence answers (that or not common sence, but predejust), and dont know how to seek for alternative answers. In either other collegus or the internett.....

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unfortunately I know just how you feel... I have symptoms of dysautonomia for over a decade and no docs listen to me: "It's just in you head" <_< I only wish if they could be in my skin for just one of my days :angry:

I hope that all of us will have some more luck soon to find someone who cares and know "what they are doing"..

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Sadly I relate to this only too well! In my search for a diagnosis to my inexplicable 9 month migraine, I had one doctor tell me to my face I "just needed a good anti-depressant". And even after my conclusive diagnosis of POTS, I deal with suspicion and misinformation pretty much every ER visit. Because my most frequent emergent symptoms (migraine and GI issues) are the same symptoms patients patients who are drug-seeking typically claim, I am viewed with suspicion and hostility from the word go. Despite the fact that I always have my PCP call ahead and advise the ER that I am on my way, and chronically ill. It is absolutely maddening! I can't count the number of times they have out-right denied me treatment because their labs didn't show anything conclusive, so despite my known illnesses (I have Celiac Disease as well), I am clearly drug-seeking and should not get ANY treatment. And I have NEVER requested narcotics. I have regularly requested pain relief, but frankly, my migraines respond much better to toradol and DHE, or toradol and caffeine. Narcotics cause rebound headaches, so I would rather NOT have them when I have migraine issues. And even when I am having an issue that would be aided by narcotics, I never specify which one...

I count my blessings, though. I have an amazing "team" of medical providers. Dr. Mark Stillman at the Cleveland Clinic is my neuro, and the director of their headache and facial pain clinic. He is the doc who initially guessed (correctly) that I had POTS, and sent me for further testing. Dr. Grubb is my electrophysiologist, and I think we all know what a gifted and compassionate provider he is! Even my PCP, Dr. Jill Nicholson (of Columbus, OH) is truly empathetic, willing to learn about areas she lacks expertise in, and happily coordinates care for my admittedly complex case. I am hoping my gastro doc back home in Columbus (currently staying with my folks in Charlotte, but I hope to go home around the first of may) will be up to treating my Celiac Disease. If not, the gastro specialist I saw at the Cleveland Clinic actually specializes in treating Celiac Disease, so one way or another, I will be in good hands.

So I am blessed that my care "team" rocks, but like so many of us, it is a total crapshoot any time I go to the ER, or get admitted to the hospital. Sometimes I get lucky and get a doc who is willing to learn, and will happily consult with the appropriate member of my "team". Sometimes I get unlucky< and not only will they insist that they can't talk to a doctor who is not affiliated with their hospital, but they don't believe in "syndromes", only "disease". Those are also the times I end up with severe, sometimes life-threatening complications. I hate those times!

Sandy

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