The Lupus Forum banner
1 - 5 of 5 Posts

Registered
Joined
2 Posts
I'm not sure if this goes here or not, but I need advice on how to pursue this. When I was 7 I started having some issues with my health, which resulted in me visiting the er on several occasions. The doctor who attended me on several of these visits noticed a "blush" I've had since I was 4 or 5 that spread across my nose, under my eyes and down my cheeks. He told my mother that he strongly believed that it was a "classic butterfly rash" and that he wanted to run some blood work to possibly test me for lupus. He was so convinced that's what I had and why I kept getting sick that he offered to pay for it himself. My mother refused vehemently. I don't think she actually understood what lupus was, or I believe that she would have agreed to the testing. When we would talk about the experience as time went on, she would always mention him as "The Quack" who thought I had lupus. I think when she heard "lupus" it conjured up an image of someone covered in rashes all over their entire body, who was on the brink of death.

Life went on, years went by, I was 16 and in both high school and competitive cheerleading. I wanted to quit because after every practice and competition my wrists and ankles would be in extraordinary pain. I eventually lost the ability to perform more than a single standing back handspring during a practice, and was demoted teams because of it. My mother was furious, she thought I was making up the problems with my joints to get out of practising. I could never get her to believe me and take me to a doctor. She swore up and down I was absolutely too young to have any problems with my joints.

When my SR year of high school rolled around, I missed about 2 days a week of school once I hit the second semester. I wasn't skipping and going out to party with friends or anything, I was simply exhausted. Every. Single. Day. I had extreme difficulty getting out of bed. Because it was my SR year, it was labeled as "senioritis" and not taken seriously. It got so bad that by April, the day after my 18th birthday I was thrown in jail for failure to attend school.

I did manage to graduate on time because I had a teacher who was determined to see it happen come Hell or high water. I was away at college when I had my first kidney attack. When I had my at the time boyfriend drive me to the er, they basically sat me down, asked me where I hurt, and without any testing whatsoever beyond a urine test, decided I had a UTI that turned into a kidney infection. Apparently I had a lot of protein in my urine. So they gave me a shot of morphine and prescribed me antibiotics and sent me on my way.

I only spent one year in college before I came home as I started having the problem with fatigue again and could barely get up to attend class. Then I started having anxiety attacks, so I felt leaving college was the only choice I had. At this point I wasn't connecting all of these issues, so I thought that maybe college had stressed me out so much I started having GAD. I moved into an apartment about an hour away from home, and through a mutual friend met my now husband. We got pregnant extremely early in our relationship when we were both 20, and had a miscarriage at 6 weeks. My OBGYN assured me that most women had one miscarriage, and it statistically wasn't likely to happen again.

During the year that went by I had problems with weight gain and loss, and couldn't keep a job down because it would take me 3 days to recover from a single day of work, and it became commonplace for me to have anxiety attacks in the parking lot before my shift because I was sooo dreading the pain I knew would be coming when I ended my shift. Then nearly exactly a year after my first pregnancy, I got pregnant again. Everything seemed fine at first, then I learned early in my second trimester I had a late term miscarriage. We were devastated, and my OBGYN refused to do any testing until I had 3 consecutive miscarriages.

Two months later, December of 2013, I woke up one day and couldn't move my right hand. At all. The best way I could describe it is frozen. If anything accidentally touched any of my fingers and caused them to move, it caused excruciating pain. When I finally had enough money to go the doctor in March of 2014, he obviously asked about my family history. I told him my father has rheumatoid arthritis, and my mother has osteoarthritis. He focused on the autoimmune disease and prescribed me Prednisone, and had me take a rheumatoid factor test, then sent me for X-rays of my wrists and ankles. I took the Prednisone for the week he wanted me to take it, and while I regained some mobility in my hand, I feel like it did very little.

Not long after my blood work and x-ray results came in. He said I was showing borderline for the rheumatoid factor test, but because it was still within the realm of normal and my x-ray didn't show any damage, he wasn't going to pursue a diagnosis. He then spent nearly a half hour basically telling me that he didn't believe I was having the issues I said that I was. I never saw that doctor again.

The issue with my hand finally cleared up in July of 2014, but in the beginning of October that year I started having a problem I had never had before. I started urinating straight blood. I was clued in by then that something was happening to me, and I was just starting to piece together some of my symptoms. I was sure that my miscarriages, my hand and now my bloody urine were all connected, but I wasn't sure how. This went on for a week. A full and complete 7 days. Then it just stopped and everything went back to normal. I started doubting the picture I had tentatively put together, and thought I just might have had the UTI from Hell. Especially as seeing they aren't uncommon for me.

Then one month later, 5 days before I missed my period, I just felt off, and I knew immediately I was pregnant. I tested for good measure, and sure enough there was the faintest of lines there. I was terrified of losing this pregnancy too, especially since my doctor wouldn't do any testing until a third loss. So I read up on every single common condition that caused miscarriages (lupus was not among them), and starting taking 80 mg of Aspirin a day along with bioidentical progesterone. This lasted until I was about 20 weeks along. Nearly as soon as I stopped the Aspirin I started bleeding. Fortunately I did not lose the baby, but I was put on bedrest. At 28 weeks I was rushed again to the hospital for my kidneys. I was completely miserable, and couldn't take any pain relief medication. They had me take a urine test, and unsurprisingly there was blood and protein. They immediately thought kidney stone. So I was taken to have an ultrasound of my right kidney to see if they could see the stone. They found no stone but my kidneys were extremely swollen and I was diagnosed with stage 3 hydronephrosis. They sent me home, there was nothing they could do that wouldn't harm the baby. I was right back at 32 weeks, same thing. Only this time it triggered contractions and I was starting to go into labor so I was given 3 round of terbutaline to stop them. I went home until 35 weeks, when my kidneys acted up again. Then at 37 weeks on the nose I went into early labor for real and had my son on July 3, 2015. After his birth and for the next year after I continued to have problems with the kidneys, the fatigue, the anxiety, joint issues, weight loss and gain, face rashes, sensitivity to light, random fevers, memory issues, (more with words than anything), and bloody urine.

These are symptoms I've had for years. Now my hair is thinning out along my part and in the back of my head. I lost my insurance after my son was born and can't go to a doctor bright now, but I can't help but feel like my mother screwed me out of years of treatments that could have been helping this entire time, 17 years now. Not to mention a diagnosis itself so I don't feel like everyone thinks I'm making up my symptoms half of the time. I have no idea what to do as far as medical care goes. What can I do?
 

Moderator
Joined
3,294 Posts
Hello Melissa and welcome to the forum.

I hope you don't mind but I added some paragraphs in to your post to make it a bit easier to read.

I can understand your frustration at the 'lost years' but try not to waste any more energy on what has been so that you can focus on the future - I know that's easier said than done. I'm afraid I can't help you with medical insurance etc but I can suggest that you start to make notes and keep a diary so that when you do see a doctor or Rheumatologist you can make the most of your appointment - there is a page on the main site which will help you with how to prepare:
http://www.thelupussite.com/lupus_diagnosis_tests/first_doctors_visit.html

If you keep a log of pains and rashes etc and rate them on a scale of 1 - 10 and how they affect your daily life, this will give a good picture of the impact your symptoms have on you.

Hopefully someone with knowledge of insurance and where to go next will be along soon. I wish you well in your journey.
Take care,
 

Registered
Joined
2 Posts
Discussion Starter · #3 ·
Thank you for the edit, and I'll definitely start keeping a journal! Does anyone have any studies done on the outlook for patients who developed lupus in childhood? I've had little luck finding any.
 

Registered
Joined
19 Posts
Hello Melissa,

What a journey! I wish I were an expert in insurance coverage! If you're in the US, have you checked with programs available thru Obamacare? Most states have offices that help people get coverage.

You could also check with your son's doctor about ways to see a doctor. The welfare of a child is bound up in the welfare of the caretaker. So his doc should see that helping you get care is a part of carrying for your son. Courage.

Sent from my Nexus 5X using Tapatalk
 

Registered
Joined
13 Posts
Hello Melissa,

Let me first say - congratulations on your son!

I came to this site many years ago, and it has been some time since I checked in - but, let me say you have come to the right place and you will find a great deal of support here.

It may not seem like it, but there are a number of people that are in the same boat as you. I'd like to relay a story to you that helped me when I was struggling with a diagnosis years ago. I contacted the local chapter/lupus foundation in the state I was living in at the time (Utah), I spoke with the coordinator?/person in charge. Her story basically went: Lupus symptoms for many, many, years - at one point in time it got bad enough she ended up in the E.R. and subsequently a coma. She said they did every test conceivable (all came back normal). They were even in touch with the CDC as to what to do. It wasn't long before she went into kidney failure - so a biopsy was taken...that's how they found the lupus. She said about the only test that ever comes back abnormal from then on is a slightly elevated creatinine.

I am in no way trying to confirm, diagnose, or speculate on what is going on...I would just like for you not to get discouraged. It can be a challenge finding the answers. I know it's an oldie, but goodie, when someone says "be your own advocate" - but it can and does work. The journal advice is excellent too!

I can very much relate to what you're going through and I hope the best for you....

Roberta
 
1 - 5 of 5 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top