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Old 09-18-2012, 06:06 PM   #1
Join Date: Sep 2012
Location: Leesville, Louisiana, US
Posts: 2
hhbkidd HB User
Immune Stories.

Hello All. I just started today, and I like to be here for other people. I have an Amazing story of my own, and I like to listen to other peoples.Here is my story.

I have had Chicken Pox twice. When I was 8, I had the rarest case of Shingles. On my Butt. Yes, They were there. I thought it was normal, and didnt tell my parents for a day or two. I told them, showed them, and ended up in the Hospital. They helped get rid of them, and not a year later, I was back in that hospital. I was sicker than ever. This trip starts in a small town of Leesville, Louisiana. They had no clue what was wrong. from there, I was taken to Many, Louisiana. They also had no clue. I was sent from Doctor to Doctor, Town to Town until it finally got to New Orleans Childrens Hospital. I was Diagnosed with Common Variable Immune Deficiancy (CVID). My mom was so upset, but luckily, there was medicine for it. After that, everything was going great, until I was 13 years old. I went to the Hospital with Jondice (or however er its spelled), and the treatment went normal. As I was getting into the Elevator, the Doctor ran to get me telling me my Liver count was bad and it was going into failure. I was in the hospital the last week of November, and I almost stayed in til Christmas. I had Auto Immune Hepatitus. 1 month, and I was out. I went in at 95 Pounds, came out at almost 190. From there, I lost weight, Moved to Arkansas, and with Home Health, I started doing treatments in my house. Exactly one year after I moved, Little Rock Children's Hospital told me that the contract with the company was over, and I either did Sub Q treatments, or I Went there every month. I was so scared, And I'm not even sure why anymore. I was so used to it I guess... But I decided to do Sub Q. Once a week, Every week. It actually worked better for me. One month after that, I moved back to Louisiana to be with my mom, and My liver failed again shortly after I found a job. The Auto Immune Hepatitus kicked in again. We were so scared, and this was a few Months ago.. And now, we are up to date.

Any stories to share, Please feel free to tell me!

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Old 12-29-2012, 02:25 PM   #2
Join Date: Sep 2012
Posts: 9
vian HB User
Re: Immune Stories.

THAT is quite a life. wow!
I'm starting to have liver issues and i have meds that i already take for autoimmune issues so i'm gonna reply to your thread. ") Give you my story.

After a 2-month stint working with a non-profit venture in Mexico, i noticed psoraisis on my elbows & knees. Not too huge a deal. Nothing to do with Mexico itself. ") I was 19. At 27, I was still working in the non-profit field focused on education. Bringing schools to low-income communities in North, South & Central America. Then, exactly the day after my 27th birthday, I couldn't walk without collapsing. What the heck!! My energy level went to zilch overnight, etc.etc. I flew home to Canada looking for an answer to what was wrong. They couldn't figure it out. One ER doc thought i was faking it. Another thought maybe i was preggers and didn't want to tell my parents. Seriously? But me on anti-depressant meds. But another ER doc took me under his wing. He was worried about my heart missing beats (& he was a heart specialist) and thought MS might be an explanation to my legs not working. No definite diagnosis could be found, just that limbs and organs weren't working correctly. After 4 months, spontaneously my body regained balance,strength,normal heart rhythms. I flew back to work. But it happened again within a year. This time neurologist from a teaching university who was also an inquisitive professor took on my case. I had to travel an hour for appointments but it was worth it. Though he couldn't give me an answer yet, he did lots of tests, and took time to explain things and treated me like a had a brain. He thought it may be this really unknown disease called Hashimoto's Encephalopathy (HE). After it happened twice more (minimum 4years from the last relapse), 3 other doctors whom he asked for opinions decided it was HE. They all said, "we have to reserve the right to change the diagnosis if new info from your case or what we learn tells us to alter the diagnosis" and i get that. I've had to quit university studies a few years ago because HE keeps me weak, less energetic (need to nap like a kindergartner 2x a day!), and i'm also still dependent on mobility tools like a cane, or a walker, and sometimes a wheelchair (that i can't push the wheels on myself because my L-side is so weak). In the past, i've had to live within my bed, but for the last 3 years i haven't, so what's great is that i have been able to live on my own again. I'm an independence-freak so it helps to have a space of my own. That's my story so far. I'm beginning a slump again into what we've labelled a mini-relapse (not generally as severe) but i keep having seizures (an HE symptom) and like i said, liver probs. I considered complained to my doc about these gnawing pains i was having after going on a celiac diet (an attempt to see if my energy level will be changed). A few stabbing yelps of pain later, i decided it wasn't whimpy of me to complain. Ultrasound showed an enlarged liver, so while the docs try to decide which med most affects my liver, i've changed my diet even more to decrease fat intake and lose some weight too. I've also gained density in my autoimmune journey. ") Whew! that feels like (and looks like) loads of writing. May it entertain you, as it has me.

Last edited by Administrator; 12-31-2012 at 12:49 PM.

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