My Lupus story. AKA Why I Hate Doctors!

[jdouglas111]

When I was a preteen I started having joint problems.  I was 13 I noticed that sometimes my knees or elbows would half dislocate.  I also started having depression issues and weird rashes from the sun around the same time.  When my periods started around 14 I started having even more issues.  The depression really picked up and I dislocated a couple of toes and fingers, I started bleeding from my colon and had a lot of headaches and chest pain and extreme fatigue.  I tried killing myself and when that didn't work I tried running away because I figured I was going to die soon and it would just be best for me to leave.  I ended up in the psyche ward where a doctor stated all of my previous complaints of pain/fatigue/joint problems where just attention seeking behavior.  My parents were told to ignore me and stop taking me to the doctors when I asked, never mind that I had other doctors who had already confirmed that I was indeed bleeding from my intestines, I was breaking out in hives from the sun, I did really dislocate joints just by moving, and I was diagnosed as having had abnormal migraines.  The doctor who told them I was a hypochondriac also told them that those are all normal things around menstruation and I'd outgrow them.  For two years I begged my parents to listen and they just kept telling me I was overreacting, I'd tell my family doctor and she'd tell me it was all in my head.  When I was 15 I dislocated my knee and spent 6 weeks in a brace.  When I was 16 I took myself to the ER with chest pain and they did a chest ct and said I had Pleurisy, they sent me for a colonoscopy again and I was again bleeding from different points throughout my colon.  They recommended other tests but my family doctor said I was exaggerating and making it all up.  My parents listened to her.

 I spent the next two years very very depressed and thinking I was crazy, I mean how could the doctors be wrong?  When I was 18 I took myself to the ER for more bleeding and extreme stomach pain, they took out my appendix which was hugely inflamed but not about to burst...the doctor had never seen anything like it before, he wanted to send me to a specialist but then he read my chart and decided I was over reacting.  Things where bad a lot over the next several years, I lost one job because I was so sick I missed two straight weeks...the whole time my mom kept telling me to get over it, I was imagining it...at 22 I was admitted to the hospital because they thought I was having a stroke, I couldn't talk/swallow, I couldn't write or anything.  It was so scary.  They couldn't find anything on my CT and sent me home saying it was another abnormal migraine. 

When I got pregnant I kept telling my OBGYN about my weird red coloring on my face, hands and feet...I kept complaining about how tired I was and how bad my joints hurt and that every time I got cold my hands and feet felt like they were going to shatter...He had seen my hospital records, he assumed I was being overly dramatic and ignored me.  He kept saying these things where normal.  When I started complaining about headaches he told me I needed to have my blood pressure checked, when it was normal he said to go home and take Tylenol.  They kept telling me I was anemic even with me taking Iron pills but he said that was normal for pregnancy.  I gave birth and everything seemed to get worse instead of better.  When my son was 8 months old I went to see an ENT, I told her my head hurt and my ears hurt and described a couple of other issues I was having.  She did an MRI and sent me to see a neurologist because it showed lesions in my brain.  The Neurologist put me in the hospital and ran a whole battery of tests on me.  After a full week in the hospital, a lumbar puncture that wouldn't heal, an angiogram, and about a million blood tests he scheduled me for a brain biopsy.  After the brain biopsy showed the spots to be inflammation and dead tissue with no indication of what could be causing it he sent me to Mayo Clinic's Neurologists.

Being seen at Mayo is amazing...I spent 10 months going back and forth between here and Mayo.  The doctors there are fantastic, they are the best in their fields and they are all magnificent.  I had test after test at Mayo...the hospital is beautiful and they are always on time!  I fully recommend Mayo Clinic for anyone suffering a strange undiagnosed condition. 

I had test after test done there, EKG, salivary gland study, blood tests, urine tests, MRI's, CT's, neurological tests...all kinds of tests and finally they sent me to the rheumatology department where they ran a battery of blood tests that showed I have a connective tissue disease!  I wasn't imagining it all these years!!  They told me it's most likely the beginning of CNS Lupus and that I need to be closely watched by a team of doctors to make sure it doesn't worsen.  They started me on 40mg of prednisone and got me in touch with a group of doctors in my area to follow my condition.  The doctors they found me are amazing.  I am now on disability which has helped me focus on healing my body and controlling my illness.  I just had my yearly check up and the inflammation in my brain and in my lungs is mostly gone.  Unfortunately there is permanent damage from how long I was sick and untreated.  I show some diminished kidney function and there is scar tissue in my brain and in my lungs where the inflamed spots had been...but its stable!  They hope they can maintain the level I'm at now and get me into a nice long period of remission.  I still have bad days, but now I understand what is wrong with me (kind of, I'm still not officially diagnosed) and knowing that there is something wrong, that I'm not going crazy has helped me immensely!  My parents now know I have a real illness.  They feel terrible for not listening to me but it's not their fault!   They where just doing what the "experts" recommended.  Because of this whole ordeal anytime I think there might be something wrong with one of my kids I press the issue.  If the doctor we see doesn't listen we go somewhere else. 

Wow, this is a long post...I love my parents, but I knew my entire adolescence that there was something wrong with me and NO one would listen.  So Please, Please, if your child tells you something is wrong listen to them!  If a doctor tells you their crazy/over reacting seek a second opinion and don't tell that doctor what the previous doctor said! 

[kandb520]

This is an amazing story!  My husband has Lupus, but he was lucky enough to be diagnosed within the first 6 months.  But I know what you mean about those doctors!! When he first got sick he was in really bad shape and we made 3 trips to our local ER. finally by the last trip he could barely even walk or talk. All of his blood counts were low and his kidney and livers were shutting down. What did the dr tell us?? HIV!!  We were both very adament that it wasn't HIV ( we are both regularly tested) and we don't sleep around. but she refused to hear it or come up with another diagnoses. She said to us "well if you don't want to take the blood test to prove it then theres nothing more I can do for you" and sent us home.

At this time I was frantic...he looked like he was dying! It was a Friday and I desperately wanted him to see someone before the weekend without taking him to that damn ER again. I called every doctor around here (because he didnt have one) Finally I got ahold of my doctor who agreed to see him during her lunch break and I will forever be grateful for that!  She immediately admitted him to the ICU where he was then transfered to a bigger hospital....by helicopter! She told me that if we would not have got him in when we did then he most likely would have died over the weekend.

Needless to say we filed a report against the ER doctor and they had a formal hearing at the hospital. She Was Fired!!! Thank god!

Way to stick to your guns!! Sometimes you really have to tell these doctors that maybe they aren't as smart as they think they are!!!

[momof3inCT]

WOW these stories do hit home! I have had symptoms for YEARS and I too had bad knees and joint issues, extreme exhaustion as a teen and was labeled as LAZY b/c I could sleep till noon! Then after 1 month away at college got such a severe case of mono I couldnt even walk, my levels were off the charts the only reason they didnt admit me to hospital was b/c my mom was a nurse. My immune system was aweful despite eating healthy. Then had a episode of passing out while driving drs blamed it on dieting b/c I was a young girl and on my way home from the gym. after seeing a cardiologist and nothing showing they blew me off. I LET IT GO TOO.......then after having my first son my ezcema flared so badly and I got rashes around my eyes, mouth and hands it was AWEFUL and all the drs did was send me to an allergist! after suffering for almost a year we moved from a hot humid FL climate to the north east and my rashes got a bit better. I went for a routine physical and a flag was raised, after 3 months of blood work every  month my dr got concerned something was up so I saw a gastroenterologist who was USELESS all he did was check my liver and send me for a MRI and constant blood work, not able to diagnose me and YES accusing me of having hepititis asking me constantly if Im sleeping around! Nice hey? then finally he ran a ANA test that was positive so he sent me a rheumatologist who in less then 2 visits diagnosed me with Lupus he said it was obvious and he ran tests that all pointed int he same direction. I refuse to take steriods so my flares are not delt with as well as they could be but I cannot find a dr who can explain why he wants me on t hem so I continue my fight to find a dr who truely can treat lupus and my symptoms!!

[kandb520]

I'm glad that you were finally diagnosed, that it the first battle with Lupus!  I've heard that most people go for years without being diagnosed.  Unfortunately there really isnt any other treatment for Lupus besides the steroids. If you are well managed without them then by all means don't take them. Theres no denying that it's an awful drug with some nasty side effects, but if you ever find that your Lupus might be out of control then you should give them a try....you might feel better.  My husband has been on them for two years now. He started at 100mg! But that's only because he was on death's door at the time. He's finally tapered down to 5mg and feels much better.

[Jadedcowgirl]

Im so sorry to hear what you went through.  I had known for years that something was wrong with me at times but it wasn't anything too seriousl other than I was very tired, I had strange rash on my shines, and my joints hurt.  In my family arthritis runs very strongly, so we thought maybe I was starting with that.  But my parents never did follow up with that, because by the time I did say something I was over the flare even though the rash was still there.  Then after I had my oldest daughter something very drasticly changed in my body and I was in very sever pain and didn't know what it was that was wrong with me.

I then was in a race it felt like to figure out what was wrong and after doctor after doctor kept saying it was all in my head I really started to wonder was it really!?!  I finally figured out on my own that I most likely had lupus and went to my doctor and demanded that I see a specialist.  She flat refused and I yelled at her and everyone in the office heard me.  I threaten to have her licence taken from her if she didn't refer me.  She still refused and I left and promised to call an attorney.  Lets just say they called me later at home saying that they had a refural for me and I told them to shove it where the sun dont shine and that I was going to find another doctor and that they better becareful in the future about how they treat their patients.  The funny thing was I saw this doctor before when she was in the Navy hospital and she left to civi pratice.  She was great while she was in the Navy hospital but turned into a carless witch with a capital B.

I fought for yrs to figure out what was wrong and to finally have a docotor finally say this is what is wrong with you and now this is how we can help you was the best feeling in the world.  I hated to have been right and was very scared but at least now I know how to treat it. 

Now my mom who didnt believe me for yrs that I was seriously sick now was diagnosed with both lupus and fibro like me.  She hasn't really stop crying since coming home from that doctors appointment and I have finally gotten a very sincer apoligy for not believing me that I was sick all these years and not making sure when I was 15 yrs old what was wrong with me.

I pay close attention to my daughter if she says she is not feeling well I listen and do whatever I can to make her better.  So far she is almot 11 now and I cross my fingers that she doesn't anything close to what me and my mom have.  I know in a few years it may start to show its self like it did for me, but I know what to look for and will act immediately to figure what she may have.

I am very glad you are doing better.  I know it took yrs for me to get my lupus and fibro under control and now have been working again for 3 yrs now.  I am so grateful to the fact I can work again.  I know it may not last long but grateful for everyday that I can work. 

Keep your chin up. 

~Jaded

[DragonFlyGals]

Not that anyone wants this life we have with Lupus, but it sure is nice to know it is not "all in our heads."