View Full Version : Hello I'm new and eager to learn

01-11-2007, 07:23 PM
Hello, I have been diagnoised with SLE as of November 2006 it took awhile, but I'm glad I finally know what is going on. Let me tell you about my situation, and a little about myself. Well I'm a mother of four as i see some others are in here. I'm a very happy, positive person and I love life and everyone...

On April 11, 2006 I woke up that morning and my left eye would not blink or close. I thought I had Bellspalsy again I have had it twice already, So I was bummed it sucked but I knew what to excpect ( well I thought). I also notice that day a slight of balancing and a little limp on my right side, As the week progressed the limp got worse and sorse everyday, also I was feeling very tired I thuoght I must be coming down with something. My walk was real strange by Friday I senn my Dr they had already started me on prednisone for Bellspalsy. I woke up easter morning with my children and I could bearley walk or hold any of my weight I would try to flex my calv muscle and nothing would happen same with my bicept. I did know what was going on. You see my mother is a nurse but I din't want her to know because you see my aunt was sick with cancer nad I thought she had enough to worry about, so when she came over on easter to see my children she just freaked call my Dr. which we both work for, and he wanted me to go to ER but I am stuborn I have children I coiuldn't leave them on easter. That night my husband helped me the stairs I couldn't wlk up them then I told him I was fine when I got to the top so I walked in the bathroom and just fell to the floor needless to say that wasn't fun.

So Monday I had appointment with my neuroligist. went to see him he was very concerned worried about maybe MS so he ordered a MRI of the brian. Then I went and seen my Dr after I walked in the door and he freakes out when he seen me and asked why the neuroligist didn't admit me to the hospital I said I don't know . So then he got him on the phone. well then my Dr dmitted me to the hospital. He thought maybe gillians or something.They did a spinal tap ( one of the worse things ever), MRI, Xrays, blood test everything came back negative except ANA , but he didn't think it was lupus. I was in the hospital for 9 days and by this time I couldn't walk at all and when I use my arms , hands I shook so bad.Fianlly I got home I was doing physical therapy using a walker ( isn't that cute when your 28). Oh I forgot my final diagnosis at the hospital from my Dr and specalist your probly STRESSED, Okay whatever..So my Dr was obcessed with stress and depression and I new I was not depressed I was so fraustrated. Well it started getting a little better. And then Bamm it got really bad I couldn't even sit my own body up my husband had to put on the toilet wipe it was horriable, embarrising. Meanwhile my Dr's trying to put me on Xanax and Lexapro for my depression. I yelled and finally told I would try just cause I wanted to prove him wrong.I started see my rheu and he did think iot could be possible lupus but not enough symptoms. so then a waiting process. So finally more symptoms came on month ulcers, rash on cheeks and nose, pimple like rash on forehead , neck, chest, arms aslo swelling in the joints, of course the pain with the fatigue. So then fianally he said you have SLE. Thank you someone listened and figured it out, well I'm doing I think just the ease of mind helps.. It still hard I don't know what is going on I still haven't got totally in remission the pain does it every stop with meds I'm on prednisone and plaqunil.. but haven't notice a great diffrence been on them sense november. Some days I feel good for a few days but the achy tiredness hasn't left and now I am just so tired, achy I still can't stand or walk for to long . I haven't worked sense april that is hard itself I have 4 kids..I know everything will be ok I know God will help me through what ever comes my way. This has been very hard for my children there getting better though. Great forum thanks for creating.. Love to everyone
't :D Crystal[/b][/i]

01-12-2007, 11:39 PM
Hi Cryssyjojo!

I'm glad that you finally got a diagnosis! The problem with S.L.E., as my Rheumatologist explained to me, is that it is a process and often, it cannot be diagnosed for months, until the patient has enough symptoms.

I understand exactly what you went through there! One of my doctors told me that it was all psychological when I was paralysed for three days; it gave me such a shock, that I actually started to hyperventilate after leaving his rooms, which produced a gigantic Asthma attack. I have never hyperventilated like that before and I have never experienced a panic attack. I used to cry myself to sleep at night because I felt as if no-one believed me. Then, I saw the most wonderful Psychiatrist who was absolutely furious with my doctors because psychologically, there's nothing wrong with me; I'm not even stressed! He ended up yelling at half of them and now, I don't really have this problem so much anymore. :wink:

Remember, anytime you need answers, support or just to vent, we're all here for you! Welcome to the Forum! :)

01-13-2007, 09:09 AM
Although plaquenil can be a really effective drug for lupus, it can take up to six months before it really starts to make a difference in how you feel. So don't be too discouraged if it hasn't kicked in yet - it may take another two or three months. I know it's hard right now, but as you learn more about the disease, it does get easier to manage.

01-13-2007, 09:24 AM
Thanks both of you. I went thruogh same thing seeing Psychologist and he said he didn't think I was depressed or stress, but my Dr wasn't satisfied with that I was actually Diagnosised with conversion disorder from my Dr. Which is crap anyone who know's me knew I wasn't depressed until they weren't finding anything else, then some of them started thinking maybe I had a deep depression. But everyone was wrong which I knew.
Does anyone know on the stomach, how does it effect the stomach I am having problems with my stomach both my upper abdomin and lower abdomin. I have had Ct done it was negative and also ultrasoud of pelvis which they found nothing. I am blaoted on both upper and lower I have pain in both , lower is sensitive to touch. when I eat I feel worse. Just wondering if anyone had a idea.. Well thanks it nice having someone to talk to that nows what I'm talking about..

01-13-2007, 04:00 PM
Welcome, welcome! Wow, you really went through a lot of the same things I did before I finally was diagnosed. I actually had a "mini-stroke" where my left side went numb, eye wouldn't focus (I had just woken up also) I thought at first that my day/night contact lens had slipped, and I tried to get out of bed to fix it and fell down. I thought my leg had gone to sleep but I couldn't move or feel my arm either. My now EXhusband, who was convinced it was "all in my head", took me to theER, sighing exasperatedly the whole time. When they did a high contrast scan, they described it as a "Pinpoint stroke", gave me some therapy to do and sent me home. Luckily, in about 4 days the symptoms began disappearing.
Luckily, shortly therafter I presented with te malar rash and the lightbulb went off in my doctor's head. Sounds strange, but wow what a relief it is when you get a diagnosis..I felt like screaming at everyone, "it is NOT in my HEAD!"

Anyhow, welcome to the forum. It has been an absolute godsend to me and I think of the others here as FAMILY...the coolest family!! love, Kathy

01-13-2007, 04:32 PM
Thaks I'm glad I found you guys

01-13-2007, 08:10 PM
chrissyjojo, by the way, (MaryCain posted this, but I can't remember where) Lupus can and DOES effect the GI tract. Plus, for sme hte Prednisne makes your stomach produce more acid. I have to take Protonix for it (read some of my earlier posts and you'll see what happened to me because of Lupus and my stomach.) again, welcome!

01-14-2007, 10:21 AM
I know about the upper GI, but this I do take nexium or prevacid and neither works. but what about the lower abdomin?

01-15-2007, 11:28 AM
My doc says it's all related...Lupus can irritate or inflame anything, and that includes lower GI too...IBS is common with Lupus patients. Love, Kathy

01-16-2007, 04:50 PM
Thanks for your imput.