Ok so I'm going to this new Rhemy and he's been running all these tests for about 4 months now
well he ran a pannel of what he calls lupus indicator tests and he said they all came back normal.
This is why i hate changing Drs all the time because then i have to start the games all over :P
I need some help on how to proceed because ive been told enough times that i have lupus that this one dr deciding that he doesn't think that's what i have and all that crazyness
IDK what to do cuz it's just becoming to much and i want to feel better and be under control
I never realized that wanting to feel "normal" was so much to ask...
please understand I'm a SR in high school barely 18 and ive been struggling with this ever escalating problem for at least 5 years and i leave for college in september.
You all are prolly older than me and have been in this spot before at some point.
how do i stop getting the answer of its fibro and just exercise through the pain *i have more system involvement than just muscles** and i'm sick of the there's nothing i can do for you junk too
So sorry to hear your situation and especially for you age but all my troubles started then so i do know how your feeling.
My Rheumo only treated me with Plaquenil and won't use no furthur drug on my SLE, so my dermo's helping instead...if you do have more issues than what they're stating then that's why they're passing you over to other Doctor's to see if another one will treat you.
The Rheumo your seeing now if he said your bloods are normal...you must take this into consideration also, that lupus or any autoimmune diseases fluctuate your bloods and can give off flase readings (in otherwords you may have something but it's giving off a negative reading)...that's why so many suffers go for years with the symptoms and keep constantley being tested hoping for it to show positive.
To actually settle your mind ask your Rheumo for a print off on your bloods and any results he's had sent to him from other doctor's..as these can help in what is happening to you.
My rheumo refused me mine but i got all the info from my Dermo and what i'd got.
Mary so many of we would love to turn back the clock to before we felt symptoms but it is an issue you have to live with and the only way to help you carry on and ease the pain is by medication given or painkillers...i take 4000mg a day on of all the rest just to help get some relief.
((My heart goes out to you mate because it is a very flustrating game)) Love Terri xxx
my prayers are with you too, Mary. I hate when the tests read false negative and the docs try to say our pain is nothing. then, after damage from inflammation they never come back and say, "I am sorry; I was wrong." But for your sake i hope you can stay strong, and with information as your weapon, keep fighting. I finished a series of talks on discerning "spirits" or in other words, how to tell is a thing or situation is from God or not. Basically I learned that if we are at peace with something, it is from God, and if we are torn up about it, then the enemy (of peace and tranquility) is at work. When we determine that the mess we are in is the enemy's doing we can take action: 1: Pray...ask God to help us know what to do, and I honestly can't tell you the other steps (but they are there) because the prayer part is as far as I get before some other crazy thing happens. anyway, here is a site if you want to look at the stuff..it has really helped me, but i know we are all in different places. anyway, i care, and i'm still here! big hugs http://www.discerninghearts.com/?page_id=1146
So Sorry about the run around you've been getting. I finally have 3 Dr's I trust. We talk about everything. Get 2-3 of them to work on it together. I have younger Dr's that went to great medical school's. I carry my plan book with to each appointment. It helps. Sounds like you are angry - you have every right to be. We have your back. Most of us have had these thing happen to us. Don't give up on finding what works for you. It will take some time. Best of Luck, Best of Health, God Bless
My dr is some indianish guy that thinks he only needs to run the tests once when the first time he saw me he saw the butterfly rash across my face and now he wants to change what he thinks it is.... $20 says tonight he'll say its fibro and its so much more than that
as for other drs the good ones are at least 2 hrs away and are in indy or chicago and not in my insurance plan
IDK what else all i'm up to is that i know my muscles are majorly involved as are my nerves i think finally figured out after 7 years why i have problems eating....its called gastroparesis..... most of my answers come from researching as much online as i can and suggesting it to the dr who may have not looked in that direction...and doing what otc is available for me to function then there's the days i cannot fall asleep for the life of me or when i sleep for 12+ hrs and still feel exhausted and i'm lucky my dizzyspells haven't kicked in yet but those aren't far off i can feel that.....and its just so much i could keep going and write you a book
and sadly you can only take so much medication like tylenol before your body builds up a tolerance... and i don't want to up my dose again cuz that would be to much for my slowly shrinking body to handle *I keep loosing more and more weight unintentionally and its kinda scaring me**
the last 3 days have been horrible. sunday i was laying in bed and my lower back started to hurt then my legs went kinda numb as well as my arm then i got super light headed so being the crazy person i am i got up to try eating cuz i realized i hadn't eaten much.... forgetting to eat happens alot but not those symptoms... anyway mom looked at me and said i was so pale i looked as though i was about to pass out well while waiting for my food i felt like my muscles started spazzing *kinda like a cramping/ shaking** food helped with everything but that and after about 20 mins that stopped as well....
yesterday i left school early which is something i try not to do starting to feel the same way.... good thing i did because i didn't realize how out of it i have become mentally until i was driving home n having problems...*school is only 3 miles away** but i came home slept for a few hrs and then tried to eat and that made my stomach hurt and made me feel like i was about to be sick *yeah can you tell eating is nearly impossible right now?**
and today i got out of bed and i had no energy and my muscles hurt i felt like i was about to fall and my legs couldn't support me i tried a shower but that didn't help anything :/...clearly i stayed home.... i have a rhemy appt tonight and i havent tried eating yet i'm just kinda sipping on juice till i can figure out what i can eat :P
Mary, I depend on my lung doctor for help. My Rhemy sounds alot like yours. Lung doctor prescribes all my meds. I seen my Rhemy for six months and he DID nothing for the pain or the swelling, wouldn't give me any straight answers. My last visit to him, I told him I wasn't coming back that my other doctors would take care of me. Sorry you are going through so much so young. You are in my prayers and I hope that things turn around for the positive for you.. TAKE CARE !!!
idk how he is about meds i know he gave me something for at night as needed incase i was in to much pain to sleep but that's about it cuz he didn't want to give me something to treat something he didn't know what it was
I know exactly how you feel. When I am tested, I test negitive for lupus as well. My DR. said it was just fibro and that I just needed to get used to the feeling. It wasn't until I started blasting his e-mail with photos of my face rash, which is better that most text book photos, that he started to listen to me. Like the old saying goes, "A picture is worth a thousand words."
well we try to keep most of my medical records together or get copys of them already..... i haven't caught a pattern yet but i know im in a flare more often than not execpt in summer
summer i hurt less and can do more but unless i'm in my long sleeve shirts and jeans *which its uncommon for me not to be unless its over about 85** my face and everything is bright red for a few years i thought it was a sunburn until i realized that it didn't hurt like one.....
ive tried getting pictures and some of the random ones people get of me you can see it in my face but its hard to get a good one that shows it elsewhere
most of my stuff is internal and ive been called nutty to many times to count.... to many drs are to niave to think that a teenager can have lupus....
My Dermo told me to ask my siblings to be tested and i'm only in contact wih my youngest sister and she's got lupus the first lot of bloods showed up positive and she also as "Rosacea" and her face is bright red and her Dermo is treating her with steriod based creams.
Well for a start off if your Butterfly rash was deep when you had it, just that alone confirms either lupus or an autoimmune disease.
Like yourself my Rheumo does'nt like treating me, although he's diagnosed but i think it's through health issues in my past and also meds i'm taking...it's a good job i have an excellent Dermo and can never fault the man.
What i'm up to with my rhemy is that he knows i have something auto immune he said my first ANA came back extremely high but because those blood tests were normal he doesn't think its lupus
ok yeahh i would think it was fibro too if A i hadn't done my research and B i didn't know there were multiple systems involved at least musclular, nervous, gastro, skin and lungs min. that's just from the physical symptoms thats not including who knows what else is going on on the inside or things that i dont see as abnormal yet....
but most of these things are simply symptoms maybe a few you can run tests on but that's it.... theyre how i feel or the way my body acts at different points in time.... i prolly should have ended up in the ER earlier for everything being numb this morning or when my legs started twitching... good thing i was laying down...
I had a family dr once about 4 years ago willing to take care of me but stuff happened and i can't see him anymore and he was one of the firsts to suggest and confirm lupus.... man i miss him.... i hope my dr tonight can say something to help or imma miss school for the rest of the week..... not to mention prolly flip out on him....
I can't keep feeling like this and missing classes and tests especially with my school policy of only missing x number of days before you lose credit... :(
i just want to feel normal...no not even that i just wish i didn't feel exhausted and in pain all the time
The most common form of testing for Lupus is the ANA and it coming back positive does'nt mean you've not got Lupus or any autoimmune disease especially with your others coming back negative because Lupus itself plays with the blood and makes it fluctuate and give off false readings...when i was tested both my ANA/ENA came in high and i was diagnosed with A1 Diseases overlapping autoimmune diseases but it took 6mths for the Lupus to show a proper reading of me having megaloblastic anaemia which was at it's lowest of 8.0.
Although your getting all the symptoms that Lupus shows, you main aspect with your rheumo is medication to help ease these symptoms your suffering, as you could have one autoimmune disease to several and lupus itself as you know is an A1 Disease on it's own.
I'm so sorry about your schooling and the pain your in but it just seems like you may have a stubborn rheumo like myself...i would actually speak to your GP also about this issue and your test results.
((Hugs & Kisses to you plus i know it's hard)) Love Terri xxx
SweetShortie2012 said:
What i'm up to with my rhemy is that he knows i have something auto immune he said my first ANA came back extremely high but because those blood tests were normal he doesn't think its lupus
ok yeahh i would think it was fibro too if A i hadn't done my research and B i didn't know there were multiple systems involved at least musclular, nervous, gastro, skin and lungs min. that's just from the physical symptoms thats not including who knows what else is going on on the inside or things that i dont see as abnormal yet....
but most of these things are simply symptoms maybe a few you can run tests on but that's it.... theyre how i feel or the way my body acts at different points in time.... i prolly should have ended up in the ER earlier for everything being numb this morning or when my legs started twitching... good thing i was laying down...
I had a family dr once about 4 years ago willing to take care of me but stuff happened and i can't see him anymore and he was one of the firsts to suggest and confirm lupus.... man i miss him.... i hope my dr tonight can say something to help or imma miss school for the rest of the week..... not to mention prolly flip out on him....
I can't keep feeling like this and missing classes and tests especially with my school policy of only missing x number of days before you lose credit... :(
i just want to feel normal...no not even that i just wish i didn't feel exhausted and in pain all the time
well i have to go see the GP here soon because of my eating problems
ive lost 6 lbs in 2 months without trying i don't exercise execpt school stairs....it can be a little scary when i really don't need to loose weight
He gave me more of a medicine called Trizanidine so i can sleep at night and ease some pain and he just perscribed me 30mg of cymbalta 1-2 times daily.... anyone know about this in treatment for pain?
He was doing a physical exam and watched me about cry cuz i hurt that badly so he's at least trying to treat the symptoms even though hes not sure what i have though he keeps saying something about lupus in the background....??? yeahh i'm not so sure....
he said my rheumatic and thyroid tests he just ran came back normal....like WTH..... why must it be positive sometimes and others not????
Cymbalta is an excellant drug for generalised body pains- takes a few weeks to take full effect but is a godsend to many Lupus can take many years to evolve and there is a lot of cross over between the auto-immune diseases. Many of us have a many year history of problems before getting a definitve diagnosis. A close relative is MCTD -mixed connective tissue disorder and full blown fibromylgia is nothing to sneeze at either- it also can be very debilitating.
he's used those words too the connective tissue disorder
The only thing that scares me is the reason its only for 18+ seeing as i'm not quite that yet...3 weeks off....
I'm hoping it helps... i'm not where i want to be in my dx but at least its a small step closer to an answer and getting better.... i mentioned the stomach problem i mentioned earlier and he kinda dismissed it like i was being silly for asking him about that i mean yeahh i know i'm not a dr and i'm not perfect but i know i'm not anorexic whatever is the cause for my eating problems is not mental its my body being stupid and i wish i knew why and how to fix it......ive gone over 3 days without eating more than a few bites a day before.... right now i'm at about LITTLE kids sized meals like think 3 year old
