Aa
Weiner Roast!!
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!
Hugs, Minnie :)
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!
Hugs, Minnie :)
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.
Mellie~
Best of luck to you. Best wishes and prayers coming your way dear.
Mellie~
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!
Love always,
Mellie~
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!
Love always,
Mellie~
Feel free to vent away! It helps so much to get it out and your post may very well help someone who has had experienced things similar to what you hav .
Thank you very much for sharing your story.
Hugs, Minnie :)
Thank you very much for sharing your story.
Hugs, Minnie :)
Feel free to vent away! It helps so much to get it out and your post may very well help someone who has had experienced things similar to what you hav .
Thank you very much for sharing your story.
Hugs, Minnie :)
Thank you very much for sharing your story.
Hugs, Minnie :)
Sorry that was so long and didn't have enough spaces. It's really hard to read. I feel a whole lot better though.
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
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
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