In Tears About The Way Dr Treated Me

[all4family]

Hi,

I went and seen an allergist, due to hives that I have gotten since I first got sick. I had been reading a little about the mast cell activation, and on another post found one more thing that applies to me. I really haven't had time to learn all there is about pots, let alone the mast cell activation. But thought it was worth mentioning. When I went in to be seen first a resident came in and talked to me, and I struggled to explain my story, and all the different reactions to medications I've had. It is very hard for me to even talk to drs., because I have had so many bad experiences with them, and I get confused easy and dont comunicate well. So after struggling to explain everything I told her I had a story I had written out because I forget too much. So she went out and talked to the regular Dr, and when they came in he didn't even introduce himself. He didn't even get the door closed, and he was already giving me a lecture about how You can give someone too much information, and they are only human too, And it takes too much time. This lecture went on, and everytime I tried to say something I was ran over. (I guess he figured I didn't deserve any more of his time.) I had a rash (amazingly) probably because the resident had scratched my arm, and that will often start my itching and hives. I showed it to him, and on to a new lecture about how itching will cause that. That the more I scratch the more that will happen. He said something about the mast cell thing that I had mentioned to the resident. He said he would check me for it even though he didn't think I had it. At this point I was already fighting back tears, and just wanted to run from the office all the way home. I was barely hearing anything he had said, and was just hoping it would be over with. He then asked me to see the pictures I had brought. I showed him the bruising on my spine. The blisters that turn into scabs, and then last the rash I get before I scratch. I don't know why but that seemed to intrest him very much. He asked if I had had it biopsied by a dermatologist, and I said no. He ordered the blood work, and some 24 hour urines. I said goodbye to the resident, and went and did my blood and urine. All the time fighting back the tears. Maybe it wouldn't have been so bad for me, but I have been treated like a child so many times by drs. and it brought back horrible memories. My husband was very upset because he knows I am usually a very strong person, and don't let other people bother me. I couldn't stop the tears anymore from rolling down my face, and finally went to the bathroom, and cried my eyes out. I have more appointments in a couple of weeks, but just don't think I can do this anymore more. I just can't take feeling like a lesser person just so a dr can have his moment of fame. I am probably just going to cancel my tests, and my appointments. I guess I am just a lesser person, because I can't keep overcoming this. It is just too depressing. I also asked if sensitivities to medications can be part of pots, and he just said no and looked at me like I was and idiot. Anyways. This is my boo hoo-ing story. Thank you for just letting me let it out.

Suzy

[firewatcher]

Suzy, sweetie, I am so sorry! There is no excuse for that from someone who is supposed to "care" for us!

Dry your eyes and try to do something to emotionally detach from the day.

((((((((((((((((((((((completely understanding hugs)))))))))))))))))))))))))))))))))))))

Jennifer

[runningshoe]

The best thing I did when I was hit with this illness as well as interstitial cystitis was start seeing a counselor who helps me navigate the medical system and cope with the ups and downs. It is where I can go to think through medicine changes, plan for the questions I need to ask drs or vent about the flaws in the system. Do you think something like this would be helpful for you? Would your insurance cover it? Hang in there!

[MelissaCrystal]

Don't waste your time with non-specialists, and what I mean by that is make sure to find a Dysautonomia specialist or someone who specializes in POTS. It took me a while to find one, but once I did, my frustration was completely over. Every other doctor, even ones who say they know about POTS, have just treated me bad. Please please don't hurt yourself more by going to regular specialists. Do research and find one that is worth your precious time!

[Maxine]

Soooooo Sorry---

What an idiot, but it doesn't surprise me. Many doctors just can't let go of their fragile egos. Sad, but true. EGOS have caused so much heart ache, AND many medical errors.

Sometimes these errors are life threatening, as my family well knows.

Please don't get discouraged, and forge ahead with the testing. Don't let this doc cheat you out of getting your answers.

I do understand how this can make you feel like mud has been thrown on your face.

I wish things would have gone better for you, and know you must feel so worn down by the ignorance of some of these doctors. Some medical professionals just can't get over themselves and they need to blame or insult the patient to protect their fragile egos.

I have been to two therapists to help me through my crazy ups and downs with my illnesses, and dealing with the ignorance in the medical community. I like them both, so I continue to see them both when needed. The first one I have seen has stuck by me even before I got my first diagnosis back in 2001. She believed me, and helped me believe in myself. She gave me the boost I needed to forge ahead for the help I needed for my PHYSICAL problems.

Sending you a big hug.

Maxine :0)

[all4family]

Thank you all so much for the support. It means so much to me. Tomorrow is my wedding aniversary, and we decided to stay in Phoenix and enjoy ourselves, but I have been so shook up by this I'm not any fun.

Jennifer. Thank you so much for the support. I sent you a pm. (if I did it right otherwise someone else on this board will think I'm nuts.)

Lina. That is a good idea, and my insurance does cover it. I do have a bit of a hard time being honest with ANYONE in the medical profession, but maybe if I could at least find one I can trust a little it would help.

Melissa Reid. That is good advice. How do I go about finding a dysautonomia specialist? I think the other dr that I see at the Mayo Clinic (where I was today, and that is the first dr of many that I didn't like) is a specialist, but don't realy know. I know he is a neurologist, but he had different dysautonomia pamphlets in his room. And should I see him for everything. I was referred to the allergist by the GI doctor who originally had me tested for the neuro antibodies. She also thinks I have dysmotility. (I don't know if I am spelling that right or even if it is the right word.) So I am scheduled for a EGD. I really honestly don't know what I am doing, or where I am going. I just keep doing everything the drs say, and am just worn out. I am sorry you were treated bad also.

Thank you everyone.

Suzy

[all4family]

Soooooo Sorry---

What an idiot, but it doesn't surprise me. Many doctors just can't let go of their fragile egos. Sad, but true. EGOS have caused so much heart ache, AND many medical errors.

Sometimes these errors are life threatening, as my family well knows.

Please don't get discouraged, and forge ahead with the testing. Don't let this doc cheat you out of getting your answers.

I do understand how this can make you feel like mud has been thrown on your face.

I wish things would have gone better for you, and know you must feel so worn down by the ignorance of some of these doctors. Some medical professionals just can't get over themselves and they need to blame or insult the patient to protect their fragile egos.

I have been to two therapists to help me through my crazy ups and downs with my illnesses, and dealing with the ignorance in the medical community. I like them both, so I continue to see them both when needed. The first one I have seen has stuck by me even before I got my first diagnosis back in 2001. She believed me, and helped me believe in myself. She gave me the boost I needed to forge ahead for the help I needed for my PHYSICAL problems.

Sending you a big hug.

Maxine :0)

Thank you so much Maxine. I am so sorry to hear that you had such a serious problem in your family. That is terrible.

Yes he was the idiot, but for some reason I still let it make me feel small. I wish I would have let myself see him as the ignorant one. Instead of running to the bathroom crying. I thought after having a diagnoses I would feel better if a dr ever did this to me again. Instead I felt worse. I guess maybe because it felt like he was saying quit feeling sorry for yourself you've seen enough drs and haven't found anything wrong! Like the pots was nothing of concern. When he took my heart rate (sitting down) he said your heart rate feels fine to me. But I guess it isn't that way all the time because you have a positive TTT.

I wish I could find a therapist I could talk to like that, but after being labled with anxiety and such I have a fear of them. Thank you for the support, and the hug. I really needed them.

Suzy

[MelissaCrystal]

Melissa Reid. That is good advice. How do I go about finding a dysautonomia specialist? I think the other dr that I see at the Mayo Clinic (where I was today, and that is the first dr of many that I didn't like) is a specialist, but don't realy know. I know he is a neurologist, but he had different dysautonomia pamphlets in his room. And should I see him for everything. I was referred to the allergist by the GI doctor who originally had me tested for the neuro antibodies. She also thinks I have dysmotility. (I don't know if I am spelling that right or even if it is the right word.) So I am scheduled for a EGD. I really honestly don't know what I am doing, or where I am going. I just keep doing everything the drs say, and am just worn out. I am sorry you were treated bad also.

Thank you everyone.

Suzy

I assumed he was just an ignorant doctor, it's even worse if was actually qualified! I'm so sorry about that. There are some resources on the net for finding the right docs, but for mast cell I'm ignorant on exactly where. If I had time, I'd look for you, but I'm already too nauseous to continue on my comp for the rest of the day, so maybe later I can help you out if I have time. Luckily, someone on these forums recommended my doc to me, so maybe you can make a post about your location and ask if anyone has seen a good doc in your area?

[EarthMother]

Ok, sweetie, let's get some practical advice (at least some humor) so that we can cope with the medical elite on their own terms!

Doctor: You know you can give someone too much information. We are only human, you know!

YOU: I understand. It is difficult for people with attention deficient disorder to focus on any subject for more than sixty seconds. I will do my best to accommodate your disability.

Doctor: You know if you itch something it will look like that!

YOU: Thank you "Doctor" (and make sure you use the air quotes, they really love that!) I'll be sure to tell my primary care physician because when he looked at it HE seemed to think this was an important symptom for you to review.

Doctor: I'll run some tests but I'm sure you don't have anything.

YOU: Thank you Doctor I do appreciate you being thorough. I'll write a check for your bill too, but I'm sure it is also a complete waste of my time and money as well.

What likely happened today is that this "Doctor" didn't want to look like an idiot in front of his new resident. So rather than confess he is CLUELESS and a p!ss poor diagnostician he went on the offense to puff up his own ego and try and look good in front of his protog?. Sorry you were caught in the cross fire of his emotional disability. I wish we could all say it is the exception and not the norm ... but my sense is after umpteen years of medical school, residency and whatever else it takes to be at the top of your field in an area of medical specialty, it is likely that you have lost touch with your own humanity. Instead of looking upon a patient and seeing yourSelf reflected in her eyes, you see another lab rat (dumb bunny) and the illusion of your own superiority makes it impossible for you to come into a space of partnership with your patient.

So ok, what to do?

• Personally, I never step into a Doctor's office without a support person of some kind.
  
• You may want to take a clip board or pad of paper and take YOUR OWN NOTES as the doctor is talking (can you imagine what your allergy specialist would have done, if you calmly clicked your Bic and nodded your head as he was "lecturing you" and you jotted down some notes in short hand on the pad.)
  
• Remember what your goal is for going in ... You want the tests done for mast cell (or whatever else it is that you want to rule out at that particular visit). You don't care if the Doctor believes you or thinks you are totally insane. Get the tests! And then take the next step.
  
• What is the next step? Coming here, where you are among empowering friends who will give you a hug and help you feel just a tiny bit better at the end of a long day.
  

Congratulations on getting the tests done you wanted!

Peace.

~EM

[all4family]

Melissa Reid. That is good advice. How do I go about finding a dysautonomia specialist? I think the other dr that I see at the Mayo Clinic (where I was today, and that is the first dr of many that I didn't like) is a specialist, but don't realy know. I know he is a neurologist, but he had different dysautonomia pamphlets in his room. And should I see him for everything. I was referred to the allergist by the GI doctor who originally had me tested for the neuro antibodies. She also thinks I have dysmotility. (I don't know if I am spelling that right or even if it is the right word.) So I am scheduled for a EGD. I really honestly don't know what I am doing, or where I am going. I just keep doing everything the drs say, and am just worn out. I am sorry you were treated bad also.

Thank you everyone.

Suzy

I assumed he was just an ignorant doctor, it's even worse if was actually qualified! I'm so sorry about that. There are some resources on the net for finding the right docs, but for mast cell I'm ignorant on exactly where. If I had time, I'd look for you, but I'm already too nauseous to continue on my comp for the rest of the day, so maybe later I can help you out if I have time. Luckily, someone on these forums recommended my doc to me, so maybe you can make a post about your location and ask if anyone has seen a good doc in your area?

Thank you Melissa for taking the time to help me even when you weren't feeling good. The DR I saw today was only an alergist. It is the one that diagnosed me with dysautonomia that I think is a dysautonomia specialist. I thank you for helping me, and I sure hope you get feeling better.

Suzy

[janiedelite]

[*]Personally, I never step into a Doctor's office without a support person of some kind.

[*]You may want to take a clip board or pad of paper and take YOUR OWN NOTES as the doctor is talking (can you imagine what your allergy specialist would have done, if you calmly clicked your Bic and nodded your head as he was "lecturing you" and you jotted down some notes in short hand on the pad.)

[*]Remember what your goal is for going in ... You want the tests done for mast cell (or whatever else it is that you want to rule out at that particular visit). You don't care if the Doctor believes you or thinks you are totally insane. Get the tests! And then take the next step.

[*]What is the next step? Coming here, where you are among empowering friends who will give you a hug and help you feel just a tiny bit better at the end of a long day.

I totally second what Earth Mother said! I always have someone with me. I'm a nurse, and have had tons of confidence talking with physicians until they stopped believing what I said about my own body. I think some docs have to have all the answers, and if you don't fit into their picture then they either dismiss your symptoms saying they don't exist or that you're exaggerating.

Today I went to pick up my skin biopsy to take to Mayo tomorrow and the dermatologist said something about my POTS diagnosis like "you're seeing so many different doctors they can't keep up and they're just labeling all your symptoms." Like it was my fault that I was being sent to so many different specialists! I was feeling really run-down already and this almost pushed me into tears, but I put my head down and forced myself to concentrate on anything but what he said. I knew if I gave in to tears, it would wear me out for the rest of the day and I had to pack and clean still. I just needed the biopsy, and left without saying anything. This guy has been patronizing on other occasions, but I just needed him for this biopsy.

Either way, keep believing that there is someone out there who can help you! It will be so worth the battle when you get some answers from a doctor who is willing to see the whole picture of your symptoms. You have to keep fighting for yourself because no one else really knows your story, symptoms, etc. You are your best advocate!

You have been through so much. It must be really hard to keep your chin up and try more doctors, tests, etc. I'm glad your husband is willing to help you through this. Please keep looking for answers and treatment!

[Ernie]

Hi,

I am always surprised on how doctors can be mean. I am sorry you were mistreated.

[all4family]

EarthMother,

Ok. Now I'm crying harder than before! I'm also wetting myself! It's painful to laugh that hard!!!!! Thank you for the sense of humor in all this! Oh how I wish I could go back and do today over with the helpful advice you gave me! You'd think I would be used to drs thinking I'm totally insane! Thank you for the congratulations. I hadn't even stopped to think hey I did get the test done. And you know you are so right (in the most hysterical way) There seemed to be a lot of tension between the Dr and the resident. She was a young woman, and seemed really on top of things. Maybe he felt threatened.

I will certainly be bringing my clipboard and bic to any more appointments I have. I will try and remember my sense of humor too.

Thanks for the laughter...yes I'm still laughing

Suzy

[all4family]

I totally second what Earth Mother said! I always have someone with me. I'm a nurse, and have had tons of confidence talking with physicians until they stopped believing what I said about my own body. I think some docs have to have all the answers, and if you don't fit into their picture then they either dismiss your symptoms saying they don't exist or that you're exaggerating.

Today I went to pick up my skin biopsy to take to Mayo tomorrow and the dermatologist said something about my POTS diagnosis like "you're seeing so many different doctors they can't keep up and they're just labeling all your symptoms." Like it was my fault that I was being sent to so many different specialists! I was feeling really run-down already and this almost pushed me into tears, but I put my head down and forced myself to concentrate on anything but what he said. I knew if I gave in to tears, it would wear me out for the rest of the day and I had to pack and clean still. I just needed the biopsy, and left without saying anything. This guy has been patronizing on other occasions, but I just needed him for this biopsy.

Either way, keep believing that there is someone out there who can help you! It will be so worth the battle when you get some answers from a doctor who is willing to see the whole picture of your symptoms. You have to keep fighting for yourself because no one else really knows your story, symptoms, etc. You are your best advocate!

You have been through so much. It must be really hard to keep your chin up and try more doctors, tests, etc. I'm glad your husband is willing to help you through this. Please keep looking for answers and treatment!

Hi Thankful,

It's so sad that even those in the medical field have problems talking to drs. I haven't fit into a picture of anything since I was sick. Until this dysautonomia diagnoses. I once had a neurologist say to me when I asked about my fainting."I think you tend to be a little dramatic about your symptoms." It's fainting. It is a little dramatic for the person fainting. Especially if they don't know why.

I'm so sorry your dermatologist said that to you. That is what my allergist said about the skin biopsy when he asked me if I had seen a dermotologist. He said yeah there are a couple of specialists you still haven't seen. Like we really want to be going to all these doctors! What did we just get up in the morning and say gee...I'm bored today maybe I will go get a biopsy of my skin! And while I'm at it a colonoscopy would be fun for next week! I am so happy you didn't give in to tears! I will think of you if it happens again(and EarthMothers humor)and I will try not to cry!

Thank you for the encouragement. I am so happy I have found this site.

Suzy

[all4family]

Hi,

I am always surprised on how doctors can be mean. I am sorry you were mistreated.

Thank you Ernie. I was just reading that you had had a really good experience with your colonoscopy no versed. And that you had been treated so well. I am so happy for you. It makes all the difference in the world. I am scheduled for a EGD no versed on Feb. 17. I am very nervous that I will panic and tighten all my muscles, and they will have to give me some anyway. That takes courage to go through a colonoscopy that way. I have avoided that test too because of the versed. I am so glad it went well for you. Take care.

Suzy

[dawn]

Sorry for you,

Before I was diagnosed, I was always treated like a psychiatric patient when I went to the ER.

Finally, my husband came with me. He does have a good understanding of human anatomy and physiology.

He got right in the doctor's face and told him that he would not tolerate him treating me like I was a head case.

He told him that something was physically wrong with me and it was their job to find out what it was.

After that, I was treated well.

Dawn

[Ernie]

Hi Suzy,

I can really empathise with you. I was treated as a nutcase for 30 years. Now that I have my diagnosis and the medical proof that it is physical I don't put up with that cr* anymore. I stand up to doctors who are condiscending and treat them the same way they treat me. They really don't like it when I have that behaviour but I don't care because I think that all humans are equal whether you are a doctor or a non doctor. I have more university degrees and years of schooling that they have just in a different department. So I put my medical file right in their face and theyback off.

The doctors that treat me well have a special bond with me. They like me a lot and they don't want to be alone on board with me as they are afraid I am going to die on them so they want to divide the medical risk. I have many specialists but this is the way they want to work my case. When a mean doctor says I have too many doctors or too many pills I tell them that if they want to manage my case all on their own and give me one pill that will make me better they understand that I mean business. Of course I don't go back to a mean doctor.

I also realised that when I go with someone else, especially a man, doctors are much more respectful.

[MelissaCrystal]

I also realised that when I go with someone else, especially a man, doctors are much more respectful.

Men, really? I've found the opposite for some reason. All the men doctors I've been to treated me like a worry-wort young girl. Constantly talked down to =( I think it definitely depends. We've both had bad luck with both sexes!

[MightyMouse]

I don't think it's a mostly male phenomenon... it's a "doctor" phenomenon. My list of top mean or just plain incompetent medical experiences include a bunch of women, some of whom were the doctor and some were the nurse of physician's assistant.

Nina

[juliegee]

So, so, so sorry, Suzy. You deserve better! If you decide to go back, maybe bring a copy of the research linking POTS to MCAD. May be tough for the "pea brain to comprehend" if he has to chat with you (or breathe!) at the same time Many allergists aren't familiar with MCAD, but they do know about mastocytosis. At the very least, he needs to rule that out and he is with the blood work. You did the absolute right thing to bring photos of your weird skin stuff. Chances are, your blood and urine will be normal- they usually are unless you've just had full-blown anaphylaxis. But this doesn't rule out MCAD. Unfortunately, you really need a masto specialist to DX that.

Good allergists (like mine) will be open to the idea that your allergy stuff and autonomic stuff are related. Both are nuerally mediated. I'm so sorry for the way you're being mistreated. It's so awful to feel sick and vulnerable and then, instead of receiving help, be treated badly. Shame on Dr. PeaBrain!!!

(((((Suzy)))))

Julie

[ladyt]

hi

So sorry to hear about that awfull doc... Why are there so many of them..? I stopped to try to gett to the bottom of this because of them, and the nice ones too (its noting more we can do).. And then i visits sites like this and know there is lot more to do (have had ttt and hart stuff tested, but not any other test for dif reasons for dys)

I changed my gp and i am pushing her more.. but o so slowely she respond.. But I am referd on to some other spes.docs now.. And preperd that it will go like always, docs whit x-ray vision (acording to them self) and bad aditud... Its so frustrating to gett no where.. Docs fear what they dont understand.. Curosity is def not a part of them...

I ust wonder how desids that some people should suffer whit out much help and support from the medical comuity..

I wish my brain was better working so i could give lessons to bad docs.. not that it would help much but..

and suzie

and U are not a lesser person for letting the doc gett to u, the doc is the lesser person... Is ust thats docs like best simpel things like a broken bone, heartatac (whit classical symptoms ofcourse),.

and if not strigt forward they whant only one symtom, more than that confuses most docs.. Sorry I am a bit harsh.. but my track rekord is so and so.. and I do know some nice one, but never a doc how could help me whit all this stuff.. ore even try.. Its like if u have that many problems u most be faking it.. heelloo..

[delphicdragon]

Sadly this sort of thing happens to us a lot. I think it may be for a few reasons, 1) we don't have an illness that fits into the "norm" and 2) lots of our symptoms overlap into anxiety. When we stand up our bodies release epinephrine, which is the anxiety chemical and sadly a "panic attack" fits most of our symptoms, except for how it's related to orthostatic stress.

I will second what has been said here. Go to the doctor with someone- preferably someone male. As much as I hate it, many doctors are egoists who think that all women are "flighty" and prone to panicking. If there is someone male involved, our symptoms are more likely to be taken seriously.

Also, when a doctor says that he thinks there is nothing wrong with you, usually he means that HE doesn't know what IS wrong with you.

Case in point - I went to a rheumatologist to try to get diagnosed with Ehlers-Danlos/some connective tissue thing because I had finally figured out that my hypermobility and pain wasn't normal. Every joint in my body that could be dislocated by someone pushing on it - was dislocated - BY THE DOCTOR. I tested positive for pain at every pressure point. I was crying in pain, trying to relocate what had been dislocated by force, for the next three days. I was told by the doctor that ALL WOMEN dislocate and have pain and that I was overreacting because no joint could actually dislocate with such little force. Finally, I said give me a recommendation to see a geneticist. I was told there was nothing wrong but got the recommendation anyway. (CLUE HERE) Within 2 minutes of the geneticist looking at me I was diagnosed with Ehlers Danlos Syndrome. (Based on the recommendation of the rheumatologist- would you believe?) Apparently the rheumatologist looked up hypermobility and realized I fit the bill- but that didn't stop the humiliation and PAIN that happened in his office. Ever since then, I bring someone with me when I see a new doctor.

Sara

Welcome to our club. Hopefully there are some kind doctors out there who don't just give up on us when we don't make sense.

[Ernie]

Hi Melissa,

I was saying that when it is a man that accompanies you to your appointment the doctor is more respecteful.

On a note: I find that male doctors have a paternalistic attitude, meaning that they treat women as if we are little girls, whether you are 12, 18, 30, 50, or 70 years old. I find that very disrespectful and condiscending.

Even in nursing homes you will see nurses call a 85 years old Mary, or Susan and the patient may be 50 years older.

[momofsara]

Suzy, first of all let me say how very sorry I am to hear about the terrible experience you had. I totally understand,Sara has been through much the same thing. Now, I ALWAYS go in to doctor visits with her and I'm not at all afraid to interrupt, or correct a doctor.. And Earthmother has exactly the right idea and I totally love how she expresses herself. WONDERFUL !!!!

Take care sweetie, and know that we always are here for you and we do care.......

Love and hugs--Susan

[Sophia3]

sorry for the way you were treated....I liked earthmothers advice...use the clipboard to take notes.

and if the doc is still a jerk...smack him upside the head with the clipboard and say "sorry i stumbled off the exam table".

Docs like these are on massive ego trips and learn to say "I don't know"

be kind to yourself...and regroup!

Sophia