New Neuro Appt.

[Notgivinup]

I got a dx. of depression. So it went about as good or bad as I expected. At least he was nice to me. I don't have any neurological disease. He noted my b/p drop and hr increase.

Ok, it's been almost 3.5 yrs. now. I'll take depression, anxiety, whatever label you want to give me. Give me whatever meds. you want. And then I'll be able to go to the park on a 80 degree day. Then I'll be able to stand up without my heart racing. Then I'll be able to take my 5 yr. old to play dates and talk to the other moms without brain fog, and feeling like an idiot. Never mind my hypovolemia, small fiber neuropathy, endometriosis, IBS, all those things can be cured by an antidepressant.

Forget that my POTS symptoms all started at a time in my life when I was the happiest and most grounded I'd ever been.

Yes, I'll agree I AM depressed. I've spent the better half of the last 3 yrs. in my bedroom. Watched my life go by while others are taking their children to the zoo. Been to doc. after doc.

But the good news is, it can all go away with one little pill. Never mind that I'm already on one. Must not be the right one. OK. Go. I'll be your guinea pig. Make me complacent. In the mean time I'm going to sleep.

[lieze]

I'm sorry it didn't go well.

Did he order a new med or make a suggestion or was that just his summary.

Good news is he didn't see anything that concerned him bad news he wasn't able to recognize the abnormalities that do exist.

[juliegee]

((((((Notgivingup))))))

Very scary when docs, who are not trained in mental health, so easily DX patients with depression. I'd have more respect if he would have said, "I don't know what's going on..." or "I'd like you to see a psychologist colleague of mine, who specializes in supporting patients with chronic illness."

I HATE when docs assume that we are depressed because they don't immediately have a DX. Imagine how enormous your ego would have to be to make that assumption......

So sorry. Please live up to your forum name and keep fighting.

Big Hugs-

Julie

[tinkerbella]

oh sweet one try to relax now. What kind of a doc did you go to? It says you've seen bev at Dr. Grubb before so that doesn't discont what she has said. Pots makes us depressed if you wern't labled it before. Don't let this knock you down. Many people take antidepressents for pots. I can't as they give me terrible side effects. My doc has written a letter to my whole team of docs telling them that I can't have them.

Also, if it gets you to the park with you child isn't that what really matters? Try to take some deep breaths and know we all love you here and that was just one person's opinion. Maybe you were having a good day. HR and BP wise. I don't like to hear that sweet you are all upset. Please tell us more and know there i must be something we don't understand and we can help you explain thing to this doctor.

So cheer up sunshine, you'll be ok. There is always second opinons, or 3rd, 4th or even more. But remember many pots pts are on meds for depression. You are not alone.

((((((((sending you lots of love and hugs.)))))))))

bellamia~*

[potsgirl]

I am so sorry that your appointment went so horribly wrong, and you have earned the right to crawl under the covers and eat a pint (or two) of ice cream or whatever else you feel like. When you're ready, come back out and see a real neurologist, who knows what POTS is. Or go back to Bev at Dr. Grubbs. There ARE people who believe you, and you have a huge circle of support right here whenever you need it.

Here's a great big bear hug, and strength and positive energy - to you!

[tinkerbella]

{{{{{{{{{{{{{{{{{{{{AWWWWWWWW, Group Hug Needed Here STAT!}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

[Elfie]

I have had similar problems recently with my usually awesome family doc. Other docs insist that I'm depressed (which im not), but he has always stuck by me. Then the other day my dad was in for a physical and my family doc starts asking about how I'm doing (I haven't seen him since I've gotten back from school). My dad goes on to tell him that I am a perfectionist and that i stress myself out. Neither of which is true, its one of my dad's problems with identifying what is "normal" for ppl my age. Apparently, binge drinking is "normal" but studying is not. Anyway, the doc then tells him that he can cure my POTS--- with a mild anti-depressant. This is the man that has always been reluctant to put me on anything. I know that it is a common treatment, but for this doc it was a complete 180. I was shocked, partially because he was discussing my medical issues with my father! And then telling a man that doesn't understand POTS that he can cure me with a magic (psych) med. Wasn't a good idea. I guess the doc's sister has a very mild case of POTS and anti-depressants have solved this for her. I love my family doc, and he is the only person locally that is willing to learn about POTS, but this almost made me want to go searching for somebody new!

[tinkerbella]

That was a BIG NO, NO! My sister tried to call my doctor one day a long time ago because she was nosy. My doc told her I can't talk to you about your sister, no way!

[firewatcher]

I'm sorry it didn't go well. Like the doc said in the latest DINET newsletter, if they doubt you....move on! Take a couple recovery days and be good to yourself. I know what you mean about being a guinea pig though....I'm about to change my name to "The Golden Hamster," it has a nice ring to it and it is sooooooooo appropriate.

[lieze]

I would question that statement I can "CURE" her. How many doctors really cure and how many treat.

While an antidepressant may help symptoms for some of us to indicate that it would cure us seems like an exaggeration if you ask me.

[summer]

notgivingup - I'm so sorry that this happened at your appointment. It is so frustrating.... I agree very much with Julie that docs who do not specialize in mental health should not be handing out this type of diagnosis ....especially when it's because they can't think of anything else. It really makes me angry. Like many of us here, you'll need a little time to deal with the disappointment, but you'll get back up again and "soldier on" until you find the doc who is willing to help. What choice do we have? Just know that we here know were you are coming from .....so many of us have been were you are. Take care.

Elfie - I would tell your doctor that you'd appreciate it if he didn't discuss your medical information with your father. Is it that he treated you and your family since you were a child? He needs to be reminded that you are an adult now. That's a breech of confidentiality, and he should know better.

Summer

[Maxine]

It's not your fault this idiot doesn't know any better. He can't help you, so he needs to feel good about himself----thus, the "depressed" label. Sounds like He might need to see a psychologist. Perhaps he has a personality disorder--------maybe he thinks he's a psychiatrist.

I'm sorry you had to deal with this, and frankly, I'm so tired of hearing the same story for the last 10 years. You have a right to be treated with dignity and grace. You have a right to confront him/her if you don't agree. You have a right to take it to a higer level if you feel treated unfairly, or if you feel he/she was abusive in any way. I had a doctor from the Cleveland Clinic tell me that I need physical therapy, then he suggested arobics----(for someone with an unstable spine and EDS!). This is considered inept bahaviour, and this should not happen from the Cleveland Clinic.

Yes, many of us ARE deressed-----------------(situational depression). This is something that develops over time from dealing with dismissive doctors who can't deal with the complexities of this illness, and blows us off as being depressed or having an anxiety disorder.

My mother in law was receiving poor treatment at a hospital, and it's sad that one of her grown children said , "we need to be careful what we say, or her medical care could be compromised." BULL ROAR! DOCUMENT EVERYTHING! IF YOU CAN'T, THEN HAVE SOMEONE ELSE DO IT! Find someone to advocate for you. If you can't, do the best you can. Take a recorder with you and tape the doctor.

There's good doctors out there, but it's depressing that it seems the good ones are outnumbered by the bad ones. No one should have to fear what their next appointment with a doctor is going to be like. They should go in with hope that they can be helped, or at the very least be treated with dignity.

Hold your head high, and don't let anyone disrespect you.

HUGS,

Maxine

[sue1234]

Feel sorry for the doctor, not yourself. It's a knee-jerk reaction for him to label "depression" when he can't(or won't) figure out what the root problem is. He can't sign his insurance paper without some kind of diagnosis, and what's easier than putting "depression". Just a doctor that was probably 200th out of a 200 graduating medical class.

I agree with the others--get back in the search for a doctor.

[Birdlady]

I tell all of my doctors that an SSRI or any type of antidepressive/anti anxiety isn't even an option. I won't go down that route because 1) I know I'm not crazy 2) I know I'm not depressed 3) Once you go on those meds a lot of them are difficult to get off of.

Anymore I'm pretty mean with doctors! You just have to be assertive. Don't allow him/her to make you feel like a kid in the office. Some doctors get off on that stuff I swear. I see them talk to 50 year olds like they are 4. It's sick.

[Brye]

I'm feeling your frustration. How awful to waste your time and not get any help. I felt like I wasted time with a neurologist that I had traveled 3.5 hours to see. My cardiologist was hoping he could help treat my POTS symptoms but all he did was rule out seizures and send me on my way. He at least though acknowledged it as a cardiac problem and offered an EP referral. He was wondering why I was so upset when he got done telling me I didn't have seizures. I was thrilled I didn't have seizures but it was back to square one on my search for help.

I also feel your frustration about having to keep up with a 5 year old. We had our last day of school yesterday and my kids LOVE the park. It's been in the 90's here and I can't take it at all. I've signed them up for camps, kids day out programs, vacation bible school, hired a babysitter. I still have feelings of guilt even though I know they're well taken care of. I want to be doing these things myself. I also have to have the dreaded 911 conversation with my kids in case I pass out this summer. I know they're old enough to handle it but I feel bad they should have to worry about it. (My oldest is 8) Hope you find a doctor who can help soon. Don't give up though. You're health is too important to you and your family!

Brye

[Chaos]

I'm just jumping in on the STAT group hug that we're all sending you.

Been there, done that with the dismissive doctor so I really do feel your frustration.

SO sorry it happened to you again!

And Elfie.... it's a HUGE violation of HIPPA that the doc was talking to your dad about you. Summer is right. Remind him that you're an adult and he's breaking confidentiality to discuss this with him.

[ana_22]

Are you able to do any or light exercise?

Have you looked into the Dr Levine protocol? ive heard some people have results with that.

Im so sorry about your experience. I think we all need to think of a one liner to ay to Dr's when this happens. Like I dont know what but something to let them know we are not there for a psych consult but their professional opinion in THEIR PROFESSION!

It gets me so frustrated when this type of thing happens. It wasn't too long ago that MS was considered a somatic condition, until they found out what really causes it.

I guess our bodies are unlucky enough to be way ahead of their time in medical diagnostics! Does that even make sense? long day......

[Notgivinup]

Hi everyone. I'm feeling a little better today. Just needed a day to rest from the emotional trauma I felt yesterday.

Thank you all so much for the kind words and hugs, and understanding. It meant so much to me to know you all understood, and were angry with me. This group is invaluable. We've all been thru so much, and I'm so grateful we can be here for each other.

I'm just going to pick up the pieces and go on. I might stay away from doctors for a little while, but I'm never GIVING UP. And it's because of all of you that I can do that. What the doctors take away from us, we get back here on this forum.

[DEBRAA99]

Apparently, it must be in all of our heads. Wow, didn't realize there could be sooooo many people with similar symptoms who are "just depressed". I have had it with these people who don't even deserve to be addressed as Doctor. And for some reason, that can't seem to grasp the concept that there is no way a person would travel for hours on end to seek relief if there truly was not a physical issue going on. Has anyone ever thought about printing off some of the topics and answers on here and shoving them in the doctor's face? I know it's been suggested to me to be polite to the doctor, even if I disagree. Why? It only reinforces in his/her mind that they can continue to get away with their dismissive, degrading, disrespectful attitudes. God I am so sick of it too!!!!!!!

[Notgivinup]

Apparently, it must be in all of our heads. Wow, didn't realize there could be sooooo many people with similar symptoms who are "just depressed". I have had it with these people who don't even deserve to be addressed as Doctor. And for some reason, that can't seem to grasp the concept that there is no way a person would travel for hours on end to seek relief if there truly was not a physical issue going on. Has anyone ever thought about printing off some of the topics and answers on here and shoving them in the doctor's face? I know it's been suggested to me to be polite to the doctor, even if I disagree. Why? It only reinforces in his/her mind that they can continue to get away with their dismissive, degrading, disrespectful attitudes. God I am so sick of it too!!!!!!!

I hear you when you say being polite to the doctor reinforces his/her behavior, but what else can we do? I mean if we're confronting, and question them too much, then they'll really get an attitude. Maybe even put a big red X on our charts, label us as "difficult" or something, and then we'll never be taken seriously. It's like we're stuck. Too nice gets us nowhere. Too opinionated or forceful? (can't think of the right word here, but you know what I mean) then we'd get pushed aside, as in, they won't want to deal with us "how dare we know stuff patients."

I wish we had a doctor on here we could ask questions. I wonder if any of the good guys or girl PoTS doctors would volunteer some time to come on here. I know they'd get swamped, but sure could help us out.