02-08-2009, 01:27 PM
Okay I don't even know where to start... I have been reading some of the boards and most sound so famaliar to me it is so scary. Anyway I was diganosed 3 yrs ago with Lupus my doc at the time told me that it was in the early stages and put me on one medication... i was told it was for inflamtion i took the meds as prescribed and didn't suffer from any systems that i knew of until i started getting these terrible pains and cramps in my belly when it was time for my cycle i was then sent to obgyn and had explority (sry i am not that good at spelling lol) srgy at that time i was in formed of an inflamed utures, cyts and something about my uterine wall any way a month later i had a complete hyster. after that i moved to memphis tn where i started to see a new doctor i took all my medical records to him and explained what was going on anf what i had been going threw... to maje a long story short he sated that i did not have lupus but could not inform mr of what was wrong with me...he took me off the meds i was taking and all that.. a couple months later i started with systoms rashes on my neck in butterfly form joint pains swelling in hands feet and sometimes legs i went in and told him about this and he tild me i was to fat lol... i was horrified yes i am somewhat over wait now but have weighed at one point in my life 50 pounds more then what i do now. anyway another doc came into the practices last year and he said that by the looks of the other previous doctors notes that i did not have lupus my systems started to get wores fast so he ran some take last month and when i went in for my results there was a sub doc in and he told me that i needed to see a rumy.. i am just so unpset that i have gone almost 3 years without and meds for this disease i mean this is my life that they are playing with.... sry to have wrote such a long discreation but i just needed to let it out... another thing is that i have trouble having bowel movments is this something that is revelant in people that have lupus or an i just crazy lol

02-08-2009, 02:20 PM
I think we should write to Obama to institute a National Slap Your Doctor DAY!!! :D Once we slap them off their high podiums maybe they will listen. So sorry to hear your story and so sorry it sounds like everyone else’s frustrations with doctors. But don't give up if you have read the threads some of us have gone through more doctors than pants :lol: Find a good doctor for you. I lived in Millington TN for 11 years and I know there are decent Hospitals downtown Memphis. Google for best rheumys in Memphis..there are about a dozen when I did the Google search then check each doctors profile make sure Lupus is one of their specialties and make sure Ins. covers and go from there. Sometimes its hard to get an answer and sometimes all we need is a doctor to explain what is going on and try to find an answer. GOOD LUCK in your search...and we are always here for ya :)

02-08-2009, 02:33 PM
Thank you for ur respones....my doctor is in millington anf i can tell u sometimes i wanna slap him and make him wake up and understand how scarey it is to hear that u have a life threating disease because it is not easy to be told something like that and then have no one to talk to about it I was blessed when i found this board and i give whomever that started this board the most praise i can after i give praise to god. but i am intersted to know what doctor u used when u were in millington maybe that can give me a jump on getting things taken care of....i have on been in the memphis area for a little over a year so i do not know much of anything about the doctors here. I am only 28 years old and sometimes i need guidance.

02-08-2009, 04:55 PM
Gentle hugs to ya parisse

We've all sat in disbief while a doctor has jerked us around. So rant on!

It is very frustrating, especially when they treat you like you are waisting their time :shock:

I don't take that off them any more. If I have questions it's their job to answer them. I just have to make sure I have my questions written down or I will forget.

I don't know if you have ever seen the movie "A Christmas Story" were the little boy, Ralphy, wants to ask santa claus for a red rider duel action beebee gun, he gets so flustered he forgets to ask and struggles to get back to santa to ask for the gun.

:lol: only to be told NO you'll shoot your eye out. That's how my doctor tries to make me feel. I just take a deep breath and ask my question again. Eventually she gets the message, I'm NOT leaving with out and answer and one that I fully understand.

We she tells me she doesn't know what's going on I ask her how she intends to find out and I suggest she send me to someone else for a second opinion, that usually gets her to move her tail feathers and run some different tests.

I still do not have the answers I am seeking, but I keep looking.

02-08-2009, 05:46 PM
Hello-I feel that I must put in a few words on this thread. I am part of the medical team. A nurse. I have found that there are good doctors and bad ones, good nurses and bad ones, good medical profecssionals and bad ones. I can say that this really has confused and upset me over the years. I sometimes feel ashamed of them.
But please remember that there are good medical people out there even doctors. :o
I am sorry that you have had a bad time with doctors. Some can be real jerks and do not deserve to practice. I could never understand why they even bothered to do into the medical field if they could not have any compassion for people and their problems. :roll:
As a few have said-if they treat you badly then first try and find another docotr. One that you can trust and one that you can talk to.
I teach patients to be empowered when going to the doctor. It is their job to listen to us and what our symptoms are as well as what questions we have, what problems we are having and what we need. First talk to the nurse who is checking you in, tell her the things you are seeing the doctor and what you need. They talk with the doctor and write down questions, concerns, etc. Bring them with you to the doctor and make sure they answer them.
If the doctor and the nurse doesn't listen to you then you need someone else to get the care you deserve and need.
Then I always ask the doctor to write down on a piece of paper what the instructions are for me. It helps them to be accountable. I am a nurse and have gone to doctor who still write down the simplest instructions for simple things for me. It means they care.
I so hope that you can get a doctor that will listen to you and that you can trust. We have enough problems with this disease that we do not need crap from a doctor.
Keep your head up and stand your ground with these guys. They are human and so are we and we deserve respect!!!!
I hope things turn out better for you. you have my support and let me know if there is anything else that I can help you with.

02-08-2009, 07:29 PM
Hi Parisse28,

I'm Rob, I'm 41 and was diagnosed with Lupus five years ago. I'm sorry. I wish you did not have to go through the motions of putting up with doctors who do not seem to know what's going on, or have no clue as to what is causing your symptoms. So many people are in limbo, and have no diagnosis. Others, are told they have Lupus, and then are told that no, they don't really have Lupus after all.

This makes absolutely no sense, and is in my opinion, cruel. I don't think you are crazy. I think you are a person with a legitimate problem. A person who has very real symptoms. The best thing I can tell you, is that you should seek a second, or even third opinion. The other thing that could help you, is for you to become what I, and many others refer to as "An educated patient". That means learning everything you can about what may be causing your symptoms. Dr.'s seem so clueless. Unfortunately, much of their ignorance lies in their lack of knowledge in regards to auto-immune disorders.

With knowledge, you can become your own advocate, and you can have more control over how the various Dr.'s and specialists treat you. Support, is another thing that can help. Most of us are in a place, or situation where we may never meet another person who is suffering from our symptoms, or are in fact diagnosed with Lupus. Talking to others who have Lupus, or to those yet to be diagnosed, can give a person the confidence and resolve needed to take control of their situation. I know this is alot to digest, but as you said, this is your life that they are playing with.

There are alot of people here who are now, or have been where you are now. There's alot of support and understanding here. I hope you can find the answers you need. Until then, know that you can always find an understanding ear here.


02-09-2009, 12:48 AM
I am so sorry for all your troubles I know you must be scared it definitely sounds like u have lupus. It sounds like you just got a whole bunch of insensistive jerks for doctors and this has happened to me before the only thing that i can tell you is to switch doctors and make sure that your next doc has actually treated a lupus patient before not all rhuemy's have. i had a navy doctor tell me i was faking for 2 years before i got so sick they had to do something about it. please dont be scared to speak your mind this is a serious disease that can go left really fast so please get a new doctor. Having a new doctor will take some of the stress and scariness out of lupus. good luck to you and keep us posted

02-09-2009, 06:03 AM
T........ but i am intersted to know what doctor u used when u were in Millington ................. Unfortunately I was a military Brat and we lived on the Navy Base so I used the military doctors. But do a Google search for Memphis Rheumy's there are good hospitals on Poplar Avenue.

Angel Oliver
02-09-2009, 06:13 AM
I am writing the letter now cause thats a fab idea to have a National Slap a Doctor Day :) ok im joking.

But i so relate to what you are going through. I have no answers but you are not going crazy at all. Today i saw my Doctor.During my 5 minutes with him he took 2 phone calls, had a conversation with someone else and had a cup of tea brought in or something brought in. In this 5 mins he listened to me for 1 minute. This is the 3rd appointment this has happened. The fact i carnt pee lol didnt seem to matter as he got rid of me with anti biotics. Oh so frustrating. If you would have chatted to me a few weeks ago i did have Lupus. Now i have not Lupus but M.E. So dont think you are alone in this Doctor saga.....we all deal with it daily. They can be so rude and ignorant and can make you feel like your just wasting their time...but YOU'RE NOT!! My advice....KEEP GOING BACK TILL THEY LISTEN!!! :) Keep posting we'll give you the support you need. I am still tempted to write that letter though lol.

02-09-2009, 05:30 PM
Oh I so feek the LOVE in this group and it something that I really need! I needed so badly to have someone to talk to about this disease, i talk to my husband but all he can say is "who do u belive ur doctor from jonesbor or the one here" i mean i am on so many meds it is crazy i am taking nerve pills sleeping pills hormone pills some type of gas pills then i am taking pain pills and headache pills. Sometimes i feel like a walking medince cabinet lol. The only thing that is getting me threw this is knowing that i have my childern and that they need me and being able to talk to my cousin daily who has MS and these diease are so simlar that it is scary some days we just sit on the phone and phone and cry talking about how bad we feel that day it is so scary but i informed her that i found a message board that really seems like it will be some help and that pushed her to find one on MS. Again I thANK U ALL FOR UR RESPNES AND I AM NOT GIVING UP UNTIL I GET ANSWERS U CAN BELIVE THAT!

Angel Oliver
02-10-2009, 04:49 AM
Oh you are very welcome and so glad you are here. Glad to see that fighting spirit coming out of you now....fab :)