View Full Version : Any Advice..?

07-31-2009, 07:38 PM
I posted in another forum but would like some more advice..considering I am second guessing again..I have been making excuses for over two years for my symptoms ..here goes all..Hello everyone! I did not know where else to turn. I am in a very difficult situation as I am a 19 year old female who was adopted from birth and has no medical history. So, that means my whole life everyone up until two years ago has been poking and probing me when all I had was a simple fever but our family doctor went out of practice and we switched to a new doctor who doesn't seem to remember in the back of his mind that I am adopted. So I go to him that I slept for 16 hours straight then 12 hours the next day and just all together felt drained just my body felt worn out and has been feeling this way off and on for months it comes and goes and I'm have breathing problems that started out during sex two years ago I would get these stabbing pains in my chest and I would have to stop now it comes and goes with just breathing so I failed all three breathing tests in february. My doctor said oh you might just have inflammation in your lungs or fluid in your lungs nothing to alarmed about you're 18 young may just be stress it will go away..RIGHT. now it's July and sometimes I can barely finish a sentence. But my story goes as is.

I saw my orthopedic surgeon for my joint pain because my primary doctor wasn't listening to me I mean I'm having joint pain all over my body it changes every day and I feel like an old lady at the age of 19 so he orders blood work and asked if I feel fatigue or anything at the time and I said no but I have a very bad history of these sleeping spells and this frequent urination and protein in the urine that no one did anything about because "I'm young and healthy" so the blood work comes back fine the ana comes back negative RA negative RBC a little low nothing to worry about but he's sending me to a rheumatologist and a pulmonologist because this isn't normal and blood can change daily.

So I go to the rheumatologist yesterday he tells me I have inflammation in my kidneys, in my thyroid from what he can tell, I have inflammation in many parts of my body which worries him at my age and he diagnosed me with raynaud's syndrome and wants to put me on blood pressure medication (I am also on my period but usually never gain weight and I gained 14 pounds in the past week since this inflammation has gotten worse since my last check up at the primary doctor) but I told the doctor I never eat! I am never hungry! I eat maybe an apple for breakfast which I force down my throat but my stomach is so enlarged and I'm very tiny I am under 5 feet tall so this must look ridiculous. I am peeing and I have loose bowels every 5 minutes so even though I am eating maybe if I am lucky 200 calories a day it is coming out in the next half hour. and this has been going off and on for the past year and the doctor said because the ana is negative I don't have lupus.

I spoke to my friend's mother this morning who told me I have every symptom she had in the beginning and her ana came back negative for three years before they diagnosed her with lupus and she told me not to give up because she told me if I'm feeling this lousy at 19 that isn't good. Do you guys have any thoughts? Should I pursue this or am I crazy? I mean I never heard of lupus until my doctor looked at me after hearing me explain to him what was going on with my body all at once with the fatigue and the urination and the breathing and he said I want to test you for a disease called lupus and mom got all upset and I said okay and when we got in the car my mom said no this is serious it's a chronic autoimmune disease and I highly doubt you have it so no one took me seriously but now everyone is because I was at college when everything was happening to me so if this is a flare that I am going through everyone is witnessing it...Sorry this is long I could go on with the symptoms I am having that I told him about even the slight look of sunburn on my face when I have never burnt in my life because I am Sicilian I even have tried to put this summer SPF 35 on my face and still came out with a slight red blotchiness on my face "butterfly rash" that my doctor so quickly called sunburn but why was it no where else to be found? Sorry if there is some errors it took me awhile my hands are so cold this morning my mom has the air on. Any advice would be much appreciated. Because I have been pushed around by these doctors for far too long because "I'm young".

Oh and I don't know if this has anything to with it but I have been on oral contraceptives for 4 years and tanning beds 3 to 4 times a week for 6 years that threw a red flag to my orthopedic surgeon on top of laying out in the summer after a session in the UV beds.

Rheumatologist diagnosed me with raynaud's syndrome, pericarditis after an abnormal ekg and an echocardiogram, joint pain and arthritis

Thank you for listening everyone help is appreciated..

07-31-2009, 08:41 PM

Wow! You're really going through the wringer right now and I am sorry to hear how awefull you have been feeling.

Personally, I don't understand how all these doctors can just wave away your symptoms and blood results with a casual and unaccountable answer that you are "young and healthy". I would think it was obvious to them that you are young and trying to stay healthy, but are fighting it right now. :no: I'm glad to hear that you, and you mom, are taking your body's symptoms seriously.

I have a butterfly rash too. Have been told it's eczema, rosacea, adult acne, allergic reaction, sunburn. I got tired about hearing what it isn't and now I take a pic of it whenever I remember to show the docs that it's there, sometimes more bright then other times, regardless of weather, season, environment and if anything, is only exacerbated by the sun (which would be why your docs might have been alarmed by the UV/Sun exposure since a lot of lupies have negative sun reactions including the rash being more visible).

Since the doc thinks you don't have Lupus, what did he say he thinks you do have? Did he perscribe you any meds aside from the blood pressure meds? What are they doing about the inflammation in the lungs and kidneys and thyroid and how does he plan to help you monitor it? When do you go back?

This is a really great site for learning about Lupus but also other AI's and also to meet others who understand exactly how you are feeling. There is a section on this site for new users. I think you should copy and post your thread there so more people will see it. A lot of our members go there as soon as they see a new thread and you will be seeing them come along with some better answers and exerience soon!


07-31-2009, 08:54 PM
Hi Givealittlelove,

U are not crazy! Please don't give up at all and find someone who u are comfortable. I started having symptoms at 14 and it took until was like 22 to find a dr who took me seriously. (I heard the same thing u are young and healthy dont worry about it) I have lupus, lyme, and strep just to name a few things.

Your story sounds familar. I almost failed my english class because I would go to sleep on sunday and not wake up till tuesday no joke! I would sleep and miss whole days or miss weekends! I would sleep on friday and wake up sunday. My Dad thought i was out partying. Anywho found out I was horribly anemic (i think normally u are suppose to be 12 to 16 and I was a 4)

However even though I got my numbers up i would still sleep a lot I would work and go straight to bed. My boyfriend would complain. (My Mono was high as well)

And the chest pain I had the worst chest pain, it would stab me where i felt i couldn't breathe, and I would have a fast heart rate. I believe that was part of the strep and pneuamonia problems. I also failed breathing tests.

Sorry for the long story but please ( I am 27 now) Do not give up and dont let anybody tell u, u are crazy.

My best friend said to me ur body should not hurt and if it does hurt it's trying to tell u something. I wish u the best of luck and I hope u feel better soon!!

07-31-2009, 10:29 PM

Thank you so much for the quick reply! The rash isn't too bad and I know it gets so frustrating! My boyfriend and I have been together for three years and he knows how I was when we first started dating he took me from a 70 pound 5 year anorexia sufferer to the person I am today so to him seeing me sufferer to get out of bed (if I even can) breaks his heart and he is in nursing school so he knows and when he studied the immune system last semester that is when he noticed my symptoms and told me to go to the doctor to get checked for rheumatoid arthritis..little did I know I was getting myself into a whole new thing..I am only on naproxen 500 mg twice daily right now:skeptical:..no blood pressure meds until winter he said my mother keeps central air at 68 degrees in the summer my hands are purple as we speak it is unbearable. Naproxen does nothing yet and I fear it will not my aunt who has arthritis I spoke to today said it will do nothing and she said she doesn't even have the inflammation like I do..My fear is the pericarditis..it makes sleeping so difficult for me so I am waiting for my appointment with him to tell him the naproxen didn't help my inflammation if he thought that was going to do anything he thought my pulmonologist would help my pericarditis and possible pleurisy but I missed the appt today so the earliest they could get me in again was Sept 2nd..Will keep everyone posted because I need somewhere to just run to for questions..besides what kind of medications is this going to require..in general? Say if I didn't have all of these "extra toppings"?

My parents said the same thing!! I slept for days!! I mean it! Days! And my boyfriend told me no more pain there is something wrong this is not good I mean he is a powerlifter and he doesn't even have these kind of pains so there is no reason a 4'10 96 pound 19 year old girl should have these pains...welll I am no longer 96 pounds after this last flare haha..boo 14 pounds of inflammation ARE YOU KIDDING ME?!? I looked at him in shock!!! I feel like people stare at me like I am some cow! But screw everyone else! I am walking around with some unknown disease where my belly is swollen my neck and face are swollen my whole entire body is swollen if they can't tell it isn't fat this is water weight then they can kiss it where the sun don't shine and stop staring :) I love you all for being so understanding..God bless and stay strong:jimlad: that is called jimlad and my boyfriend's name is jim haha and he wears the same bandana when he worksout :) he is in bed next to me and made me put it..night all! sweet dreams!

08-01-2009, 12:53 PM
Hello Givealittlelove...
It took 3 years before I had a positive ANA, but every symptom and pain. So don't give up, the tests can bounce back and forth. I have my first rheumy appt on Monday. Hang in there and best of luck to you.

08-01-2009, 08:40 PM
YES the symptoms and tests you have CAN be ALL OVER THE PLACE. I had my FIRST symptoms show up as far back as 11 yrs ago. Then they layed dormant until about 3 1/2 yrs ago. I JUST got my diagnosis 1 week ago. It took me that long to get the right dr. It CAN and WILL be frustrating BUT this is YOUR HEALTH and YOU KNOW YOUR body BEST. LISTEN to it and dont let ANYONE tell you nothings wrong BECAUSE believe me that WILL happen until you find the RIGHT dr. Log EVERYTHING you FEEL and what was going on WHEN you felt it. YOUR body is screaming at you, listen to it and know that we are here for you because WE UNDERSTAND and thats what you NEED through this journey. GOOD LUCK and sending you HUGS XXXXX:cute: