Put on your long-johns, grab a coat hanger, and gather 'round the bonfire! We're having a weiner roast!
How many of you have been treated poorly by a doctor? Told it is "all in your head?" That if you weren't over weight, stressed, didn't have children, or some other ridiculous reason, you wouldn't have the symptoms you're having?
I was told by my first neurologist that if I took a muscle relaxer before bedtime that my symptoms would go away. Um, okay, so lack of sleep would make ONLY the right side of my body have numbness, tingling, burning sensations, and my right leg give out. This with NO neurological tests and completely disregarding my one-page timeline. This is also the same person who said my brain MRI was normal, and come to find out, there are two lesions.
I also want to roast SOMEONE, not sure who, from the hospital where I had my LP done back on December 7th, yet my neurologist STILL doesn't have the results and neither do I! Maybe the office staff at my neurologist's office needs to be roasted, too ;-)
I realize everyone is human, yet it is so frustrating to be sick and have to expend preciousenergy ggoing behind these peopl .
Who else has an experience they would like to share? Won't necessarily help our situations but at least we canvent and iidentify with each other!
i would love to roast my old pcp, who told me a number of things from i am over weight, to lazy(um i have 6 kids and far from lazy) that is was all in my head cause she didnt see anything on my test results (even though she only ever ran basic blood test) and the kicker was it was fibromyalgia even though i tested negative for all the trigger points.
Ugh, that just makes my blood boil! You don't meet the criteria for Fibro, yet by using magical tuning forks and voodoo dolls it was determined that's what you have. No, they didn't know what you have and had to comeup with something. That's like saying someone with normal blood sugar levels is diabetic. Ridiculous, right? And lazy with all those young'uns?! You are Superwoman! I don't know how you do it!
I am so sorry that happened to you. Commence roasting!
Gee, my doctor list is too long...the fire would go out before I could finish all my stories! LOL!
But, I do have a "weird" doctor story to share!...
I think this neuro was probably the 5th or 6th one I saw back in the 90's when I had my first attack....
He briefly examined me and said I didn't have MS but ordered a spinal tap. He was very strange! He turned off the lights in the exam room when he examined me. I was creeped out! ......I had the spinal tap done....nurse called and said my results were normal. I went to the hospital and picked up my results anyway....the results were NOT normal! My protein level was high!
I planned on calling the doctor back the next day to ask questions....but I saw on the news that night....."Neurologist gets arrested for molesting his male patients!!" You guessed it....it was my neuro!! Thank God I was the wrong gender!!
Needless to say I never was able to ask him about the "LP" result.
I kept all my test results in a folder to have for the next neuro I would see. When I finally had an appointment, I went to go get that folder....my husband (NOW EX) said he threw it away...since there was nothing wrong with me!!
Can we roast Ex husbands?? :) Last I heard the neuro was "roasting" in prison! As you can imagine I am full of stories!!
Anytime you all want to be entertained just let me know!!
Oh Laurie! That sounds just like something that would happen to me!
We can roast whomever we please :D I believe in using humor to heal. I have experienced things and read things that others been through that makes me say, "WHAT?" Better to laugh than cry, and it is time to start laughing!
I sure hope the poster from another thread tells about the "Tight Pants Theory." And no, it isn't a new sitcom ;-)
Now, some things aren't funny, they're hurtful and can be downright traumatic. In those cases, it helps to have someone who understands and cares.
I would like to roast the first neurologist I saw after my primary did MRI and found many lesions. This neuro told me to stand and hold on to my breasts and raise up on toes. Then told me all that was wrong with me was old age. I was 50 at the time! Thsnkfully my primary was appalled and sent me to my current neuro who diagnosed me quickly with ms.
Oh my, beema, that is so degrading! He actually had you hold your breasts?! What a sick, sick person and a total jerk. Unfortunately, he is probably still practicing. :( I am glad your pcp is on your side and got you a referral to someone else.
My jeans are a too tight lady coming to sit by the fire.....
So happy to see this thread Minnie!!! Happy you brought it up again. Doctors can cause more stress then good sometimes.
Shocked by what a couple of these Neuros have done!! Sick people, seriously!
After having paralysis from my left hip done to my feet the Neuro looked me over and went on to explain to me that "the jeans or pants I wear may be to tight and causing restrictions !!! And if that wasn't enough , I'm sitting there with a good pair of sneakers on and she says "I think u may need to wear better shoes, get yourself a good pair of sneakers" WHAT???
Well while sitting by this fire I might as well share another "scary" story.... Went into my PCP's office when I first experienced TN, this was about 2 years ago after already being told I could have MS, she examines my face and feels around, says "this very well could be a result of TN, why don't you have your Massage friends massage it for you" no nerve pain meds, no MRI, have someone massage my face when I couldn't even have air hit it !!! Then she walks out the door !!!
Okay just one more.......
One Neuro I saw about 5 years ago was doing a exam and stops.... Goes onto say " this is one test that will tell all..... Why don't you get up, jump up and down, this tells me that everything is okay" I REFUSED !!!
Thanks god for the Neurologist I'm currently seeing and keeping faith in the medical practice!!
Yaaayyyy! Go, Minnie! Forgive me - I totally forgot about the Weenie Roasts! I'll grab my coat, and the hanger that was holding it!
I only have one story - an MS specialist at UCSF that said "not MS, just arthritis". I was ready to grab the can of BS repellant right there. I went back to the general neuro who diagnosed me (bless the man), and he said, "well, yeah, you've got cervical arthritis, but you've got MS, too. And I don't care how f&*@in' small and invisible those spinal lesions are, you've got spinal lesions, as well as the brain lesions we can see!" Ahhh, a man who speaks the truth, and his mind...he'll be 80 years old this summer, and has no urges to retire.
But I'm attending for all you folks who have been mistreated and handed heaping plates of BS! Stoke the fire, Minnie, this is going to be a big roast!
Hi Valerie, inspiration of The Tight Pants Theory (yes, apparently a Hollywood producer saw the idea and loved it. They'll make tv shows about anything! ;-) ) Jump up and down?! Ummmkaaayyy...
I'm sure glad you are here too, GG and your neurologist sounds absolutely fantastic! I was diagnosed with cervical spondylosis and all kinds of other funky stuff in my cervical spine 7 years ago. Of cours , it took forever for me to get a referral to a specialist because my pcp attributed it to stress.
Everyone is welcome and the fire is hot. Come join in!
It was humiliating! I cried all the way home. My drs nurse called me later to see how it went and when I told her my dr called me later and was furious! Between my primary and neuro and other things that man had pulled on women he is no longer practicing. I am so thankful I had a caring and alert dr to take care of me after that experience.
I would have cried all the way home too. Thank goodness your pcp supported you and that he is no longer practicing. He should have had to pay restitution and at the very least spend time in jail. How horrible that he traumatized you and others so!
Lemme get this straight, Laurie. The guy had to turn out the lights to determine you weren't male?
Recently went to see neuro-ophthalmologist. Instead, I saw an assistant who insisted that I only needed new glasses. When I say "insisted," I mean he wouldn't budge. Arrogant little .... whatever. He figured, since my symptoms faded after the last time I got new glasses, it would work again. I guess he didn't think the gabapentin I've been on for 3+ years had anything to do with it! Burn, buddy! Wooo!
Oh, what part of relapsing-remitting requires further explanation... Doctor?
I'm not paying the bill, and they'll get a nice letter explaining why.
Ok!!!! I have a doctor to roast! How could I forget about my recent (1 month ago) to my Neuro-Opt.
I was sent to him as an "emergency" by my MS specialist...who, upon examining my eyes, noticed my left eye wasn't moving correctly. (My right eye already was dx has having 6th nerve palsy)
He got me in the next morning to see the Neuro-Opt, but by then my eye was fine. He said come back in a month for a recheck....which brings me to the appointment one month ago.
He examines my left eye briefly and then my right eye...he says to me....
"Are you sure Doctor MS specialist thinks you have MS? Uh, I guess he must if he has you on Copaxone."
Then he says my right eye problem isn't due to MS and I am fine. I had to remind him I didn't come to him because of my right eye....It was because my MS doc sent me because of what he saw in my LEFT eye!!! HELLO! He kind of gave me a condescending look and took out his little recorder....saying my eye problem is not (then he looked at me) due to demyelination. Whatever!!
Maybe if he got a 'little roasted' it would burn off that ego he has!!
When I had an eye problem this week I went to my regular Opt. who examined me and said I needed to see my Neuro-opt. to address my worsening double vision problems...and probable (now) mild optic neuritis. Yea right! Grrrr!
We haven't had a good old-fashioned Friday night neuro roast in ages - it made me smile to see someone had sharpened up their roasting sticks and lit a few embers.
It used to be a regular gathering to do here.....
The first neuro I ever saw for this could only think about my weight. I saw him three times, and he kept dwelling on my weight. On my final visit with him, inspite of multiple lesions (including dawson's fingers) he actually said this to: "What you need to do is get off you a** and move! Seriously, put a gun to your head if you have to!"
I was too stunned to even react. My husband wanted to hurt him!
I seriously wonder why these neuros are like this? Do they honestly think there are THAT many people who are making things up or that being overweight, underweight, stressed causes these things? ESPECIALLY if there ARE lesions, as was your case?
Are they just burned out? Does being a neurologist attract people with a haughty personality?
I realize we'll never know. Yet I, and I believe a lot of us, wonder. Is it because they don't know their profession very well so they are jerks to hide behind that fact?
Thank you very much for sharing. All of you, and keep your experiences coming and have a great week.
Oh Minnie!! I just went through five long days of that same attitude towards me. Except at the time I could not walk well. I was told I could walk and could take myself to the bathroom. The nurse actually even refused to help me after my son asked her too. He didn't believe me when I told him what they said to me. I had held it for so long that morning, that he had to put me on the bed pan. I was so embarrassed. More actually happened to me while I was there under their care. All because my MRI didn't show anything wrong with me. They made me feel ashamed of myself. Today I am throwing that thought out the window because of this forum. I am not the only one who has been treated poorly. Today I will quit dwelling on it. Much love to all of you! Jamie
Can I add my neuro to the list? He gave me a dx of transverse myelitis last year and sent me on my way. Told me I'd get better in time, but to come back if I experienced anything new. 10 months later I do have new symptoms -- my left hand went numb and my hands/arms are in excruciating pain, every day, no matter my activity.
He declares that this isn't related to my other neuro issues and suggests its probably AR, even though the only commonality of my symptoms with AR is pain. And it's not even in my joints. It's that deep ache we all know and love.
Anyway, bloodwork comes back inconclusive so he again sends me on my way, telling me to come back in three months to have my blood tested again. Oh and he took me off my antidepressant and put me on Cymbalta for the pain.
Three weeks in to the Cymbalta, I'm having awful side effects and am nearly suicidal. I called his office on three different occasions crying hysterically, begging for help. One of these times my call wasn't even returned until the next day, when his nurse told me to just stop taking the Cymbalta, as in cold turkey. I ended up weaning myself off the Cymbalta and putting myself back on my antidepressant, of which I still had some leftover.
Frustrated by their lack of response by phone, my hubby just walked in to their office one morning and asked when I could be seen. They told him I needed to go back to my GP and if she warranted my sx were neurological in nature to have her submit a referral.
Yep. Waiting to get in to a different neuro now!
Thank you for providing this spot to vent! Sorry it was lengthy! This was all just last month, so it's a bit of a fresh wound!
I'm going to move back from the fire a bit, 'cause my arms are starting to get prickly, LOL!
I am so glad to read everyone else's experiences. I had a new one last week, but let's start at the hosp when I first got diagnosed.
First, the nurse tried to start me on an IV she must have been knew. She tried three times in my right arm and even told me she pushed the needle threw my vein. Then says, " Aren't you numb on your left side, I'll try that arm one more time before I get someone to help." I must have given her one of those looks that could kill because she changed her mind really fast. I understand that it's hard to be new at something, but don't tell someone that you shoved a needle all the way through their vein. My arm was bruised for 6 months, no lie.
Then I had a CAT scan the NP told me that the radiologist has never seen anything like this so I need an MRI. I'm thinking I have a rare brain tumor at this point. After the MRI she comes in and says that it's MS and that I'm going to have to be admitted. The Neuro on call will come talk to me possibly that night most likely the next morning and then left. At this point I had no idea what MS even was. So I busted out sobbing, thankfully I had people with me and the Nuero came about a half hour later.
At the hosp follow up 3 weeks later, I still really didn't have any answer from the doctor about this disease except what it is. So I asked if I was goiong to get my vision back. He said, "I don't have a crystal ball so I can't answer that." Fair enough until about 3 months later.
I had been on Rebif for 3 months at this point, and was so incredibly miserable. My depression was horrible, my anxiety was through the roof, I couldn't get through a day with out crying at work because I was so exhausted, headaches, flu like symptoms that didn't go away, welts and rashes from the injections that would last over a week, and more.
I finally took myself off (meaning I skipped 1 dose before I went back to the nuero). One more thing, I got copies off my notes all my symptoms were on the wrong side and he had me listed as being on Betaseron instead of Rebif. The nuero was extremely mad that my mom asked him about what other options I had as far as DMTs, and refused to believe that I was having the bad of a response to it. He kept saying that without the Rebif, even with him not having a crystal ball, that I would end up in a wheelchair while eating through a feeding tube and peeing on myself in my diaper. The got up and walked out of the room. That's just the highlights of that appointment. Btw I asked him to fix my notes and they never did. I recieved my fire letter a week later, and the last note basically said that we were absolutely irate.
On to the second neuro, who at first I thought was so much better. Great first appointment. Then trouble starting with prescriptions and getting calls back. They're a big office so I can understand, until last week. So all week last week I was pretty sure that I was having a psuedo relapse (I had a really bad chest infection a couple of weeks a go so it didn't surprise me) my fatigue was overwhelming again (oh, yeah my last appointment he said it was normal to be a little tired, he can understand he has chronic fatigue... how do I make an eyes rolling emoticon?) I was having trouble walking and moving my leg from the knee down. So Thurs after lunch I had this weird episode. All of a sudden I just felt weird. I started getting really tired, then my eyes started feeling like I was going to cry, surprisingly this is one time that I wasn't crying : ) Then everything got really, really heavy and then I could feel my legs getting weak. It was like my brain knew it wasn't working right so I tried to tell my mom ( we share an office), and I couldn't talk I could get a few words out but not a whole sentence. After writing some messages she called the neuro for me. They'll have the nurse call me back this was at 2.
On Friday at 3:30 they called my mom back, the doctor had left the office at noon the day before...it gets better...the doc told her that there was nothing he could do for me go, to the ER if I was still having the problem. He would need an MRI. I can see that he would need an MRI, but why not just tell us the day before that he was out of the office or call back and find out what exactly is going on. So after getting fet up with her, my mom had her call me.
So when I spoke to her, I told her that I didn't have my last MRI because I simply couldn't afford the $300 copay. The nurse then gives me attitude, not just rude kind of attitude but the I'm older that you so I'm going to act like I'm your mother kind of attitude which nothing annoys me more. Oh yeah, while were at it to all the nurses and health care professionals out there that treat young women in this way...don't do that it's incredibly rude and demeaning...you don't know me, you don't know what I know or am capable of learning, you don't know who I know that I can ask questions and get answers from! Yes I do bring my mom to all my appointments because my memory is now horrible and I have quite a few cognitive issues. Now I lost my train of thought and my honey just finished dinner so I'm gonna go eat. There was more to this rant though.
One more thing my mom has 30 years working for a doctors office and I have almost 10. We know how to behave in an office; how to respect, treat, and understand patients; plus what should and should not be acceptable from our doctors such as not being called for over 24 hrs. None of these experiences would have ever happened! That includes everything that I've read on here. Sometime it just disgusts me that our healthcare providers can be so, for lack of a better word, ridiculous and nasty! Thankfully my nuero-opthomolgist is one of the best doctors that I've ever been around. I honestly thank God for having him on my team.
Thanks for listening and starting this! Hopefully what I wrote makes sense. I also, have an appointment next month for a new neurologist. His office has already told me that my first appt will be at least an hour. Hopefully he is good. I am also expecting a fire letter from nuero # 2 at this point since my mom let me know that she made sure that the nurse understood how annoyed she was with their office. Maybe I'll start hanging them like trophies of all the jerk that I've gotten rid of. : D
I am so sorry for the difficulties you are having with the doctors offices...people who do not deal with the constant onset of new symptoms all the time do not understand how difficult it is for us to get out of the house, use energy, remember things and stay focused without losing it all. I will pray for you Minnie. I have had the last 10 years of doctors, insurance companies and even my ex-in-laws telling me it was all in my head I was crazy, I am lazy, I just dont want to work... They are idiots!!! DO you think I would rather pay for self catheters for a year than go on a nice tropical vacation with my husband??? Hello these people are so dumb! They can't possibly know the pain and suffering we endure before we even call their office because how odd is it that one morning we wake up and can't urinate or can't use one side of our bodies. You can vent all you want here Honey that is what we are here for to support each other to vent to each other and to remind each other to have faith on the bad days that will lead us through to the good days. I used to think I didn't have any good days then I had to look at it differently because I have 4 boys and years of life ahead of me to continue my legend of adventurer, extremist, adrenaline seeker... I have been the go go go cliff diver, rock climber, hiker, mountain bike last minute fun person! People though I was too much and now they say look where that got you....It got me some amazing experiences that I will never be able to do again honey and I wouldn't trade those memories for anything. Just like now my hubby and I are learning together, praing together and finding activities we can do in my wheelchair. He is creative and we have a great time even though it wipes me out at times.
Best wishes to you dear. Good night try to rest well and don't let those people take away who you are because they can only do that if you let them!
Oh my your experiences have not been a great flight either! I am so sorry. Who gives people the right to act this way toward others. I void through a catheter 100% of the time, I get infusions and have had this dang infection since November 10th and they can't get rid of it! The PA at the Urology Institute in Eugene told me "your urine looks decent I am not going to run it. You are fine. So my husband and I get in the car and drive 2 hours to my PCP's office and she does a culture on my urinalysis to find out my infection is still there. She calls the Urology office who tells her that I would get rid of this infection if I would stop practicing anal sex...WHAT?!?!?!?! I do not do that and who the heck do you think you are to make assumptions like that! Go to hell in a hand basket. Now I am looking for a new Urologist. Hmmm Not happy. I love my PCP she is wonderful and has been by my side through all of this and she notifies me when someone isn't treating me right. I was never so mad! Then my PCP spoke to a Urologist at OHSU and he looked over my dx list and history and said get her irritable bowel syndrome under control that is why she has horrible chronic UTI's and kidney infections and the antibiotic resistance can be coming from the auto-immune. Hmmm think I might start seeing that guy I liked his answer and my PCP said he was very well manner'd. I don't know why "some" of the medical providers and their office staff think they are God's and there only there for the pay and not the patient care. I am pretty happy LilMinnie set up this board because this venting and knowing that others are experiencing the same things makes me feel a little less crazy. I was starting to believe that maybe some of this was in my head and my pain doctor said absolutely not do not listen to them that comes from the insurance company not wanting to pay and the providers to proud to say they don't know the answers for you. So because they are to proud we suffer their lack of respect and starting over with new provider after provider this time with a trail of notes that say we were dropped by them for hostility or lack of patient cooperation in treatment....the direction our medical society is going is not good at all. I am so blessed when I find a provider I like that I refuse to let them go. WHen I married Chris and moved to Sweet Home I kept my PCP in Roseburg, Oregon 2 hours south of where we live because she is good she is kind and she is resourseful!
Best of luck to you. Best wishes and prayers coming your way dear.
Oh, and to top if off, he wrote in my chart that I "refused" to do the HIV test. I did not refuse. I said fine, I'll do it if you want, but I don't have it, I have zero risk factors. So he decided to make me sound like an uncooperative patient.
Also he wrote that I "demanded" a spinal tap. I never even MENTIONED a spinal tap, I merely agreed when he suggested it.
I'm glad we're having this Weiner /Pig Roast because it sounds like there are a lot of us who want to be heard. I don't necessarily dwell on this because I do have a lot of good things and blessings in my life.
I, too, think and get mad about the money I've spent that could have paid off my car, gotten me and hubby out of town for a long weekend, or a nice big screen (just in time for The Big Game ;-)).
Thus far my family and DH have been pretty supportive. I try not to talk about my health with them much because I don't want to worry them.
My first neurologist was a doofus. My current one seems like he wants to help, yet there are some problems with his office getting some of my test results and I don't know if it is them or the hospital but I'm the one expending precious time and energy and money trying to get them.
I wonder, if my body keeps going down hill and no conclusive test results, just how determined my neurologist will continue to be in trying to help me.
Perhaps those of us who have been mistreated are sick and tired of it, literallyand ffiguratively, and for that reason are more vocal. I have sadly noticed that the thread I started regarding compassionate doctors has had little activity.
Do those of us who dare to be complex cases exasperate these doctors and that's why so many of us are treated badly?
Just food for thought.
Keep your stories coming... They do help others and it is good to know that someone understands.
My turn - this will probably turn into multiple posts.... :-)
1) let's roast my 1st neuro - he wrote in my records that he doubts very seriously that I had optic neuritis (I saw him for the 1st time about 2 mos after the first occurence). Yet, the eye doctor that I went to during it said that I had it & my 2 subsequent neuros both looked at my eyes & both could tell that I had it in both eyes in the past.
I'm also roasting him for keeping me at a Dx of transvers myelitis even though I continued to progress and also have symptoms unrelated to my spine.
2) I'm roasting all the radiologists that have continued to scan quickly thru my MRIs and miss multiple lesions - when one of my neuros sat down with me at the computer and showed me 4 lesions that they missed in my brain, 3 T1 black holes that they missed, and a c-spine lesions.
3) I'm roasting my primary care doctor that sent me a copy of my ct scan back in April with a note that says it looks fine. Yet, the radiology report said that I had a "possible malignant process" and multiple reactive lymph nodes, including stranding in my mesentery (sign of metastic disease or tumor), and multiple things all over my liver.
She also gets roasted for telling me that I'm just not eating enough when at that time I had lost about 15% of my body weight. I'm not an idiot, I know my activity level, height, & weight - it's easy to figure out how much calories that you need. And if nothing has changed and you're dropping all this weight - then something is going on with you.
4) I'm roasting my 2nd neuro who blantly ignored that I kept telling him that I had so much fatigue that I couldn't function. He never told me that there were medicines out there for MS fatigue.
He's getting roasted for laughing in my face when I told him I'm considering going on disability.
He's also getting roasted for putting in my reports that I've gone for 18 months without any symptoms when I had just given him a list of all of my symptoms that I've had and continue to progress & have new ones - and for saying in his notes that he's doing neuro exams on me when he wasn't.
And he's being roasted for calling me on my cell phone & telling me that I should find a new neuro because he's really busy with clinics right now. Yet, when I called his office from a different number, they told me he's still taking new patients. He never liked me and didn't like that I kept turning in reports saying that my records were incorrect.
There's much more to come, but I'm out of time for now. I'll be back..
Where can I begin?! Blessed & therapeutic venting... ER 3x in a month (12/11) due to excruciating pain prior to my journey in limbo-land (no Neurologist appts.til spring, and I'm bed-ridden; lesions found in November). I was told to see a psychiatrist.
When the lesions were discovered (via my gp), I phoned the ER nurse, saying,"Please tell Dr.xxxxx that his diagnosis of mental illness was incorrect, & that its very likely MS. I thought he'd like to become a better Doctor, you know, for next time?".
She said,"As a nurse who loves her job, I decline to tell him. As a female who's been dismissed far too often - I'll spread this like wildfire. Don't worry!".
What a delectable mini-victory. Um, except the MS part, lol...
(Don't get me started on my ex-husband, warden, splitfoot, beelzebub, dark lord, anti-christ...). Name it & he did it.
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