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givealittlelove
08-01-2009, 08:20 AM
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..

Could this be lupus or am I truly wasting my time because I didn't even know what this was before the doctor mentioned it to me when I told him my problems and when he saw my three failed breathing tests abnormal ekg and given amoxicillin 6 times in 2 years for "pneumonia" because I had fluid in my lungs..? wtf is wrong with these doctors in pa!?!?!?..

God bless

rob
08-01-2009, 09:22 AM
Hi Givealittlelove,

I'm Rob, and I was diagnosed with Systemic Lupus nearly 6 years ago. One thing you should know, is that you CAN have Lupus, and have a Negative ANA. It's not common, but it does happen, so a Negative ANA alone DOES NOT rule out Lupus. Many of your symptoms sure do sound like they could be caused by Lupus.

One thing that helped me with my diagnosis is the fact that my mother has it. You don't have any family history you can look to, so that could make things a little more difficult. The stabbing pains in the chest/ribs is something I still deal with. With me, it's inflammation of the ribcage. Very sharp and sudden pain at times. I have oppressive fatigue similar to yours, and I can sleep the clock around. I also have little to no appetite most days.

I don't know if you have Lupus. Do I think it's possible-yes. You have every right to be an assertive pain in the butt with your doctors and specialists. Don't let them give you the "your too young" line or make you feel like it's all in your head. You are obviously having real symptoms, and you deserve to know what's going on for your own health, and your own peace of mind. Write down all of your symptoms, no matter how odd. Note the frequency and intensity. Take the list with you to your appointments. Take a trusted friend or relative to your appointments with you for support. Have them talk to the Dr. to confirm that you are indeed having these symptoms, and they are having a negative effect on you. By asking questions in a place like We Have Lupus, you are becoming an informed patient, and you can be your own advocate-a very good thing. Be persistent, and don't give up in your search for answers.

Let's see what some of the others here have to say. Welcome to our group!

Rob

Angel Oliver
08-01-2009, 10:58 AM
Hello and welcome to the site.Im so sorry you have been going through all this and after reading your story my advice is
KEEP FIGHTING!!
You keep going to Doctors,be strong dont let them change your mind,keep going n going until you get some proper answers. I have been fighting for answers since 2004.I nearly gave up and was going to believe i had a nervous breakdown :) Then when i began to make a nuisance of myself by constantly telling the doc,im swollen,i have a rash,i dont sleep,i sleep too much,i carnt move,im in pain,my hairs falling out so far this is what i got out of my fight so far....Asthma,Raynauds,Fibromyalgia,IBS,Acid Reflux,M.E Chronic fatigue syndrome,depression n anxiety. At Christmas was told i had Lupus then bloods came back n they changed the diagnosis again.I nearly even left this site as i felt a fake. But now..i am being tested every 6 weeks for Lupus.
See,if i would have been intimidated by the doctors i have seen in the past,n believe me some have been complete horrors to me, i would have believed i had a nervous breakdown.But they HAD to listen once i lost all my hair as it was visible,then i couldnt breath,then i swelled up n have a rash...oh the rash they never see lol. I have had 3 lock jaws,teeth out n surgery.So...yes...my advice is you fight to find out what is wrong with you then you will get meds to help and be able to live allot better painfree n less fatigued n breath better.
We are all here for you,ask us anything.We also have fun too.
Keep strong!
Love n hugs
Amanda.xxxxxxx

Bonita
08-01-2009, 11:20 AM
Hi givealittlelove i am from pa. also i do not know where you live but i have a wounderfull rhuemotologist in Lebanon, Pa. about 20 miles away from Hershey. I just wanted to tell you that i have lupus and myositis and no one in my dads or moms family has ever had this i do not know where i got it. Many of your symptoms are what all of us go through some have different complaints so just hand in there. Every time i go to the doctor i have a list the length of my arm to ask and he tries to answere it all. I know it can be frustrating at times. List every thing that happens to you when you go to the doctors. Love Bonita

Pearl
08-02-2009, 08:50 AM
As everyone has said, keep fighting for answers. Make notes of your symptoms and keep them in a journal. Pay attention to when they start, when they stop, what affects them (if you can tell) etc. Get copies of your test results every time a doctor draws blood. Do some research, and find a good rheumatologist. You may have to see more than one before you find someone who will work with you.

Treat this as if it was the most important job of your life (because it is). Be firm when you talk to the doctors. Demand answers. Don't stop until you get them.

Come here for support. We understand your fear and frustration.

Keep us posted.

Jana

mountaindreamer
08-02-2009, 01:41 PM
hi givealittlelove,

as you have already witnessed from other members, this is a great forum to join, and we will help you in any way that you need.

I agree with others, keep fighting.....i had a positive ANA and it still took 10 years to get a diagnosis.....lupus is a very individual illness, effects everyone differently, and is sometimes very difficult to diagnose.....but, do not give up....you will find a dr. that will help you.

about the sun and your face....i now use 100 proof sun block on my face. I believe it is made my neutrogena, but i do know that i got it at Target. 35 proof is not strong enough to prevent sun damage. Also, exposure to sun can elevate the joint pain, fatigue, and other symptoms, not just the malar rash. even though it is weird looking, i wear clothes and hats that protect my body from sun exposure...any body parts that are not covered, i coat with the sun block. You might want to try this for a while and see if some of your symptoms will reduce somewhat.

Also, watch your red meat intake.....red meat and lupus really don't go together....many of us have either deleted red meat from our diet, or have significantly reduced how much we eat.

and lastly, don't let anyone make you feel like there is nothing wrong with you....something is going on (sounds like lupus), and i hope you can keep driving forward until you find help.