Okay so i haven't been on in a while because i lost internet but im back now and could really use some help
Im going to a new Family Dr and she's ok she ran some blood tests...just the wrong ones and is sending me to a foot dr for the lumps on my foot. She actually saw my foot turn purple and blue!
My problem is if i don't get on some kind of medication soon to help idk what im going to do.
I was getting ready for bed and something that i had completely forgotten about since it has only happened once before occured. My face is completely numb. so i started looking stuff up on why it would do that. Its seriously an inconvience and uncomfortable but i don't see anything big about it. The stuff that comes up are Peripheral Neuropathy and stuff linked to lupus from it.
So that gets me doing all my research again on lupus and it hit me again. I'm not going to get away from it no matter how much i think and i try i know its what i have. I might only be 17 but i am not stupid and i know my body better than anyone.
But how do i convince the drs that's my problem so they can start helping me reach some relief.
I cant keep living in all this pain and having to keep my room so warm just to be able to function im not sure what im going to do when i go back to school in a few days
Could you imagine going to HS in pain having parts of your body randomly feel like their asleep * this is a normal feeling for hands and feet just not my face**, being so tired your practically falling asleep in every class, waking up most days feeling like you were hit by a bus, having such appetite swings your mom worries, having your hair falling out so much that you can fill a brush and clog a drain in 1 day, having all color drain out of your face at times that even people who don't know you ask if your ok, trying to find a way to hide how horrible you think you look when you have a butterfly rash on your face that shows how cruddy i feel on the inside and still having the everyday stresses of a teenage life and having all your friends look up to you because they see your stuggle and yet your at school almost every day
Its so much sometimes and i feel just because im young nobody listens to what im really saying and its so hard sometimes
I just wish i could find a dr who listens and tries to help me but since that prolly wont happen anytime soon i have to try to get my current dr to understand i just wish i knew how
Thanks to anyone who will try to help and writing that paragraph litterally made me cry i didn't realize how much ive been bottling everything up but sometimes its easier when nobody listens
Just keep trying. Ask around for a good family dr., you need one who will take more than 5 minutes with you at a time, if he/she doesn't have time to listen to your concerns, he's not the right dr. for you. They are out there, it just may take a while to find them. Another thing I have found that helps me? I fake it until I make it. No matter how bad I feel in the morning, I get up and push through if possible. I think what a great day it is going to be, I'm my greatest cheerleader, and it really makes a difference. Good luck and let us know how you are doing.
Hi Sweet Shortie! Listen, I am so sorry to read what u are going thru @ such a young age when u are @ one of the best parts of ur life, it is UNFAIR, I KNOW, BUT, LISTEN, U WILL BE OK! U need to find a Doctor that WILL LISTEN TO U.... if he/she doesn't then move on to another, DO NOT STOP till u find some answers! All the symptoms u are saying, I have had too......See, Autoimmune is SOOOO hard to fig. out, it not only baffles & destroys us, but the Docs too.....It is MYSTREIOUS/RARE.....It is life-altering & hurts inside & out......We are here now for you, I am happy u are back, u need support from others who understand personally! And this is a GR8 Group! Being ur age in HS, I cannot imagine how u must feel, but keep that head up Girl! YOU ARE STRONGER than u give urself credit for!!! Remember THAT!
On another note. does Autoimmune run in ur family??? RA, MS, etc.....??? Cause that can help....And what blood work have they done & what has come up in them??? Have u seen a Dermatologist for the butterfly?? They will be the doc for skin issues.... Keep me posted & as hard as it is, please remember u will be OK, I started w/ symptoms @ 19, I am 35, married 14 yrs & have 3 sons, and THEY NEVER came up w/ a definitive diagnosis for me either, LUPUS-LIKE is what I have been told, BUT i decided to NOT LET IT DESTROY ME, I AM A WARRIOR & SO ARE U!!....My Mom had it, she passed when I was 14. But that was MANY years ago & things were diff. & she also smoked.....DON't SMOKE! ;)So it runs in my family...
well finding a good dr is hard because its rather difficult to change drs all the time and have to bring the "book" of records as we call cuz litterally with all the tests that have been done in the last 6 years its litterally the size of a book Ive had 7 ANA's 5 were positive Ones that gave an iffy diagnosis: Ive been to 2 rhemys 2 Family and a Neuro i had a rhemy a family and the neuro all say i have lupus *only the rhemy did anything and that was predinose 10mg back in 8th grade I'm a sr now** the other rhemy which was a RILEYS dr said fibro and the other family said raynauds and sclerderma/ CREST and the reason its so many different drs and no help is because Dr A will say i think its this go to DR B to confirm this Dr B oh its not that i think its this but go to Dr C.... and so on thus developing between hospital visits and drs i have a book of medical records but it seems that noone really knows what to do with them anymore
it's all a run around but still all the stuff still falls under lupus and its all so confusing
Last night i was in one of those moods i went to curelupus.com and copied off their symptoms chart and highlighted everything i knew i had one color everything i think i had but wasn't sure another color and everything i was pretty sure i didn't have was a 3rd color it made me feel a little better thinking now what if i actually printed this and handed it to my dr i wonder what she'd say..... its like i know what i have and i do what i can to try to explain to my drs and try to push them in the right direction and they don't listen and its like do i have to come in and shove it in your face to get you to see what all is wrong with me
I know i had a cousin on my dads side with it n it was found after they died but seeing as my dad isn't in the picture we don't know to much about his side Moms side its alot of heart problems and genetic stuff but i do have a 1st cousin i know has MS maybe i should see if my uncle on my dads side can get me more information about my family history.
I always try to push through. to me i only "fail" my day if i don't try and i feel its better to go and be sent home then to not go at all n loose a whole day at least if i go n come home i accomplished something even if its harder for me than most of my friends to do anything
SUZIE: could you explain what you mean by getting diagnosed with lupus like and what they do and you do personally to get relief and don't worry i don't smoke my bf does but he trys not to around me cuz i start coughing really bad and my chest will hurt
Well What I Mean by Lupus-Like is what they all said cause that ANA was Neg. but I predented with all of the other symptoms on the "list"......I have other antibodies seen in lupus, like Anticardiolipin/Antiphospholipid, low C3 & C4 complements, sed rate was high one time a couple yrs ago when my face went numb from inflammation of my temples.....went to Neuro who diagnosed that "vascular" issue from the APS......my Mom dies @ 47 from Systemic Vasculitis of Unknown Cause, and YES she had LUPUS, bad discoid, really bad @ one point, pains, etc. BUT NEVR till the day she passed in 1990, did she test pos. for ANA.....SO, I am LIKE HER in that way! It SUCKS, cause they then look @ ya like ur CRAZY! And as u said u r pushed from Dr. A to B to C.......it is BAD & SO Damn Frustrating!!! Anyways, I was yrs. ago when it all began put on Pred. of course, blew up like a balloon, Plaquenil which I was severely allergic too, Methotrexate after that then Cyclosporine which had bad side effects. They kinda looked @ me like it was in my head, it was terrible, and I thought I was sick yrs ago, heck, compared to nowadys, that was NOTHING!!!! I was a Guinea Pig, (like my mom as for years) so I came off it all, and got married & had my boys......I hurt, believe me, and today is one of those yucky days, but I manage, cause personally back then none of the meds helped, they only made me feel worse w/ side effects! So I just keep going, like the energizer bunny....haha..... So back then with the meds it was a lose/lose situation! So, I hope I answered ur questions, if not keep em' coming, lol.......That is what I mean by "Lupus-Like" in termonology it means "GIRL, U r not "text-book" so this is what we're gonna tell u!!! LOL.....Keep a sense of humor too, u have too or u can go CRAAAZZZZY! ;) BUT, I am happy u do not smoke, that hurt my poor Mom in the end, and I think we have enough troubles without having smoking to add to it! So Good, I am glad u don't!!! TTYS Sweetie!! Keep Smiling!!! Suzie :0)
SweetShortie2012 said:
well finding a good dr is hard because its rather difficult to change drs all the time and have to bring the "book" of records as we call cuz litterally with all the tests that have been done in the last 6 years its litterally the size of a book Ive had 7 ANA's 5 were positive Ones that gave an iffy diagnosis: Ive been to 2 rhemys 2 Family and a Neuro i had a rhemy a family and the neuro all say i have lupus *only the rhemy did anything and that was predinose 10mg back in 8th grade I'm a sr now** the other rhemy which was a RILEYS dr said fibro and the other family said raynauds and sclerderma/ CREST and the reason its so many different drs and no help is because Dr A will say i think its this go to DR B to confirm this Dr B oh its not that i think its this but go to Dr C.... and so on thus developing between hospital visits and drs i have a book of medical records but it seems that noone really knows what to do with them anymore
it's all a run around but still all the stuff still falls under lupus and its all so confusing
Last night i was in one of those moods i went to curelupus.com and copied off their symptoms chart and highlighted everything i knew i had one color everything i think i had but wasn't sure another color and everything i was pretty sure i didn't have was a 3rd color it made me feel a little better thinking now what if i actually printed this and handed it to my dr i wonder what she'd say..... its like i know what i have and i do what i can to try to explain to my drs and try to push them in the right direction and they don't listen and its like do i have to come in and shove it in your face to get you to see what all is wrong with me
I know i had a cousin on my dads side with it n it was found after they died but seeing as my dad isn't in the picture we don't know to much about his side Moms side its alot of heart problems and genetic stuff but i do have a 1st cousin i know has MS maybe i should see if my uncle on my dads side can get me more information about my family history.
I always try to push through. to me i only "fail" my day if i don't try and i feel its better to go and be sent home then to not go at all n loose a whole day at least if i go n come home i accomplished something even if its harder for me than most of my friends to do anything
SUZIE: could you explain what you mean by getting diagnosed with lupus like and what they do and you do personally to get relief and don't worry i don't smoke my bf does but he trys not to around me cuz i start coughing really bad and my chest will hurt
I Forgot to add, BUT, my mom did have pos. skin biopsy for Discoid Lupus, so if ur skin is involved then go to Dermatologist if ya haven't already......Even w/ CREST/Scleroderma, I would think that would be the doc for that too??? Why do they think Scleroderma w/ u , what symptoms of urs do u show for that??? Suzie :)
HMMM, That is interesting Ann, even though you hd the photosensitivity & POS. BIOPSY, they still seemed clueless, Thank God for the recent doc who did the ANA! I'll tell ya, THIS is one MAJOR ROLLER COASTER RIDE!!!! ~~~~~~WEEEEEE>>>> Lol....;0) Suzie
Ann A. said:
Dear Sweetshortie,
I am not going to give you any advice 'cause there is enough here. I am going to say that yes I can imagine what it feels like going to high school with undiagnosed lupus. I had symptoms of at least two autoimmune diseases as a teen. I did not get diagnosed until I was 21. And then, just as Suzie says, I was initially diagnosed through my pos skin biopsy for DLE. As little as five years ago when I needed a new rheumy I was told that I did not have lupus. Three physicians looked at my skin rash (they were not discoid lesions but evidence of how extremely photosensitive I am) and treated me for a fungal infection, even though they did not see any fungi in the scrapings. I was lucky enough to have a new internist who looked at my skin and ran an ANA. BOOM
SMART! Question Ann, Do u think years ago, like the doc that you really liked & diagnised u but got sick & retired, were better listeners & had more compassion than the younger ones of today?? They seem like they are a bit "cocky" nowadays?? Just curious, by the way, if u don't mind me asking, how old are you now?? Don't answer if u aren't comfortable, I totally understand. Just seems like u have lots of experience under your belt, which is such a blessing! My Mom's Bday is Jan. 24th, she would've been 68, yeah, she was 47 when she passed in 1990. So young still, right?? I miss HER SO MUCH! <3 Suzie :0)
Ann A. said:
Suzie,
when I was in grad school I got great treatment from the University of Illinois Medical School. Then I got great treatment from the Virginia Commonwealth University Medical School. And for years I had a great private rheumy who was the best diagnostician that I ever met. That is why I tell everyone that the doc they are looking for is the best diagnostician they can find whatever specialty they are in. But then my great rheumy had a heart attack and retired. I was no smart enough to get my records from his office and the ones from the Universities were too far back for them to find. So, In my late 50s I had to start the diagnostic process all over again. Which means that I could not be diagnosed until I was in a flare. But several physicians did not recognize a flare when they saw one. When I found the one that recognized it, I stuck with him. And now I am smart enough to make sure that I keep copies of all of my lab results.
I totally understand you sweety! My kid sister has a disease called “parvo” or the “5ths disease” she was in high school like your self and had to be home schooled :-(. I do remeber her saying things like her hair was coming out and the pain she was in. I my self was in pain too but I soon was to find out a few years later I was in a ton of pain too. One day at a time , ask questions , if you don’t like one doc go to another express your concers and most of all remember you always have us!!
Thank U Ann for ur Condolensces, that means alot, and she truly was not only the BEST MOM EVER, but an AMAZING WOMAN LOVED BY EVERYONE SHE KNEW!!! :) I can only wish to be 1/2 of the woman she was....and I now have the Love of a Beautiful Guardian Angel....<3 WOW, God Bless YOU, 65 & going STRONG as a TRUE WARRIOR! U are an inspiration.......and u should pat urself on the back. You deserve that!!! Interesting view on the docs, I so, do get what u said though, I guess not all younger docs are too bad, nor are older ones.....to each their own & you're right, the practice means so much in the care u receive! It is all LUCK.....of the DRAW! ;) I am very happy that u have found a doctor to care for you that you really like, that is the MOST important part of dealing with this! As we have read from many members here......it is a BATTLE!!! It has been very nice getting to know u more these days, and I am happy to have yor friendship! Thank You! And my prayers are always with you!!! Keep up the GR8 Work w/ ur recovery!!! :0) luv & {{HUGS}} Suzie :0)
Ann A. said:
Dear Suzie,
Please accept my condolences on the loss of your Mom so early in life. I am happy and proud to say that at age 65 I have survived with a diagnosis of lupus for slightly more than 45 years. I don't think that today's young physicians should shoulder all of the blame for the way they practice medicine. A great deal of it has to do with the demands of insurance companies and pressures from pharmaceutical companies. My second diagnosis was delayed because both the physicians and I were being held hostage to demands of HMOs. It was much easier for me to get diagnosed and treated when my insurance changed to a PPO and I did not need approval from a primary care physician in order to see a specialist. Which also means that my PCP was not being punished financially because I sought care from a specialist.
I also pay attention to how the physician's practice is organized. I received some great help from university medical centers and I have received some lousy help from university medical centers. One thing which has made a big difference in the extent to which physicians listen is the amount of time that they schedule for each patient. This seems to vary in terms of if they are in a group practice or in a solo practice. One source that I read says that a physician who is part of a group sees an average of 28 patients per day while those in solo practice see an average of 20 patients a day. Some of my worst nightmares have been with older physicians in group practices who took a misogynistic and condescending attitude toward me because they knew that women just complain too much.
My favorite physicians, the ones who have time for me, old and young, have all been in solo practices where they schedule each patient for one half of an hour. My current internist is young. He schedules me for 1/2 hour. And he listens to me carefully. He has been listening and remembering so well that my last visit only took 25 minutes. You should have seen the look on his face when he looked at the clock in the waiting room and saw that there were five minutes left on my appointment time. I was leaving a very satisfied customer.
HA, Hi Moonlight! They told me when I was about 20ish that I might've had "Parvo", I knew of it cause I worked for a vet & animals (puppies) get that...I was a bit confused, but was tested for it at the time...it was negative then....I can't believe it, I really haven't heard of it other than that incident?! Interesting......I feel so badly for ur sister & her suffering, itis so UNFAIR & she is so young! :(.....It is so awesome that u r trying to learn more for her sake! That is an AWESOME BIG SISTER, if ya ask ME! Sending well wishes your way!! :0) Suzie
Moonlight butterfly said:
I totally understand you sweety! My kid sister has a disease called "parvo" or the "5ths disease" she was in high school like your self and had to be home schooled :-(. I do remeber her saying things like her hair was coming out and the pain she was in. I my self was in pain too but I soon was to find out a few years later I was in a ton of pain too. One day at a time , ask questions , if you don't like one doc go to another express your concers and most of all remember you always have us!!
Hi Ann, I Know that now, but, back then I was like "What I Got parvo from the puppies @ work", lol......Anyways, that was then, and I do know better now.....I know Parvo in human does mimic lupus big time though! I feel so badly for her, that is such a shame.....the same as I feel for everyone here!!! It plain ol' Sucks!! :0( Suzie
Ann A. said:
Human beings do get a Parvo virus known as parvovirus B19 and as moonlight butterfly pointed it is also called the "5ths disease." I do not believe that humans and animals transmit parvoviruses across species. They have their parvo and we have parvovirus B19.
Hi Ann, Thank U for saying THAT bout my Mom! <3 :0) And ur right, the solo practices r much better & the less they deal with insurances the better.....that is for sure!!! I wish I could find a doctor like that! Someone that really LISTENS WHEN YOU TALK! And knows who the heck u are!!! :0) Suzie
Ann A. said:
The best moms leave great daughters to mark their passage through the world.
Yes, the practice of medicine has changed a lot since I was young. Most people who become physicians really do want to help people. Then they find that they do not work so much for themselves as for the senior partners in their practice and the insurance company. They have got to put in the hours churn out the numbers to pay the high debts that they racked up getting through medical school. The process through which physicians working with HMOs have lost control over their interaction with their patients is called "the mcdonaldization of medicine" because of the speed with which each interaction must be handled and the fact that there is no time allowed for dealing with the individuality of each patient.
The physician that I love does not work with HMO patients at all and runs a solo practice. That is why he is able to schedule fewer patients each day and give each of us the time that we and he decides that we need. He makes additional money by providing chelation and intravenous vitamin therapies for people from all over the state.
PS - the research says that women physicians spend more time with their patients than the male ones do.
Suzie D. said:
Thank U Ann for ur Condolensces, that means alot, and she truly was not only the BEST MOM EVER, but an AMAZING WOMAN LOVED BY EVERYONE SHE KNEW!!! :)
Sorry to hear about your struggle. My goodness do I relate. I was going to internists and family medicine docs for 2 years. They couldn't understand why I had an elevated ANA and all of the pain. And, they said I needed Prozac for my nerves.
Meanwhile I could hardly move (liver toxins). Finally was diagnesed (at 55).with autoimmune hepatitis by an ER (specialty) doctor. Also when Lupus did develop age 57 (another ER visit), again was diagnosed by the ER doctor. I was a mess for about three years. Finally got a rhuematologist after being admitted to the hospital with pleural effusions (infection between the lung lining and lung tissue). Then, I was stabilized and didn't have to take pain pills. Sometimes at night I had to though.
My suggestions:
It's very appropriate to ask for pain pills when you "need" them. Give a list of medicines that your were taking under your previous doctor(s) care (if this is appropriate). Try to see a rheumatologist, they specialize in autoimmune diseases and run the correct blood tests. Perhaps you have already?
It seems like most drs don't know how to correctly identify a lupus flare or know nothing about it
It's kinda like they put lupus into an "all in your head" catagory so it doesn't really exist so its a push to get the diagnosis
I was on prednisone for a short time and i kinda remember it i don't remember how much it helped but im betting it helped some i do remember getting big from it though i was in a size 7 in juniors for the only time ever but im back to my little size of kids pants which is nice but i hear all these side effects of the meds and its like id really rather not gain weight or feel worse than better or be on like 20 different things every day
I do make sure i have some kind of pain pills in the house at all times its easier for me to have them and not take them unless needed then really really need them and have none and go to the ER - i got tramadol from a dr dealing with my ankle and the lumps about 2 years ago its the only thing i know that when the pain hits and i know tylenol wont help will take the edge off. For me its easier to think around a fog from meds than it is to think around pain if that makes sense
Okay here's another problem maybe you can help with.
How do i explain it to my mom?
she's over in im dealing with the problem i can see * meaning my ankle and lumps* but yeahh that may help with some of the pain i need a way to get her over into i know there's more with my daughter than there seems i have to help find her relief i mean i guess you could say she's kinda in denial because what parent wants to go out looking to get a diagnosis desperately needed that says your childs going to have this for life and we can only try to ease the symptoms i'm pretty sure none want that
I'm thinking that maybe i'll go for a Rhemy at Mayo in Chicago after i turn 18 if not sooner. Its kinda sad that i went to Rileys and they didn't help at all
Do you guys think Mayo would be a good place to go to get an answer?
Heard that Mayo Clinic is 1 of the best centers for Lupus out there. So if u can, then definitely do it!! U sure did get lots of opinions, so I am sure u have a lot to go by…Good Luck!! Suzie :0)
SweetShortie2012 said:
Thank you guys so much for some of the help
It seems like most drs don’t know how to correctly identify a lupus flare or know nothing about it
It’s kinda like they put lupus into an “all in your head” catagory so it doesn’t really exist so its a push to get the diagnosis
I was on prednisone for a short time and i kinda remember it i don’t remember how much it helped but im betting it helped some i do remember getting big from it though i was in a size 7 in juniors for the only time ever but im back to my little size of kids pants which is nice but i hear all these side effects of the meds and its like id really rather not gain weight or feel worse than better or be on like 20 different things every day
I do make sure i have some kind of pain pills in the house at all times its easier for me to have them and not take them unless needed then really really need them and have none and go to the ER - i got tramadol from a dr dealing with my ankle and the lumps about 2 years ago its the only thing i know that when the pain hits and i know tylenol wont help will take the edge off. For me its easier to think around a fog from meds than it is to think around pain if that makes sense
Okay here’s another problem maybe you can help with.
How do i explain it to my mom?
she’s over in im dealing with the problem i can see * meaning my ankle and lumps* but yeahh that may help with some of the pain i need a way to get her over into i know there’s more with my daughter than there seems i have to help find her relief i mean i guess you could say she’s kinda in denial because what parent wants to go out looking to get a diagnosis desperately needed that says your childs going to have this for life and we can only try to ease the symptoms i’m pretty sure none want that
I’m thinking that maybe i’ll go for a Rhemy at Mayo in Chicago after i turn 18 if not sooner. Its kinda sad that i went to Rileys and they didn’t help at all
Do you guys think Mayo would be a good place to go to get an answer?
well second opinions and all that get so frusterating after a while new dr after new dr showing them whats been done n how those come out and its even harder when you KNOW something is wrong but all the tests say otherwise its kinda like my ankle you can see it turn colors you can see the lumps and how they move and change sizes yet x-rays MRIs and CTs all say there's nothing there
Hang in there and find a good rhuemy. I struggled for yrs before my lupus diagnosis but my rhuemy helped by caring and continuing to test me as well as to give me meds to help with the symptoms. Hang in there and keep going to the doctors