View Full Version : Hello :)

06-14-2011, 06:22 PM
Hi all, my name is Wendy, Not sure that I'm ready to face the reality of what has been going on. So I may just sit back and read this site and take things in for awhile. I'm still not even sure I completely know what is going on..About a yr ago, I started having pain in my hands, in October I was diagnosed with arthritis, the Dr wasn't sure what kind, In January the pain changed and went into my elbows, shoulders, hips, knees, and my feet, I started to take ibuprofen way more than was wise so that I could deal with the pain. In February, I went back to the hand Dr and told him that something was wrong and that the arthritis was spreading, he didn't believe me, so he ordered blood work to test for exotic types of arthritis, I went back in March to get the results, as he's going through the results he's saying that this is good and that is good, ahhh but this, the DNA DS ANTIGEN, that is positive, and that is bad. And then told me to come back in 3 months. So I made an appt with a Rhematologist had to wait almost 3 months to be seen, he walks in found out I was moving and was very short, He said without doing lots more test that he wouldn't diagnose me with lupus, but in his opinion I was in the beginning stages and that in 5-10 yrs it will be full blown and that I needed to go home get on the internet and see what I have coming, and that it will either be kidney failure or lung failure that gets me. So I as of yet am still unsure what the reality is. Thanks for listening.

06-14-2011, 06:33 PM
Welcome to WHL =) So let me get this straight? Your doctor said you are in the beginning stages, but wont say you have it? Is he retarded? Clearly if you are in what he would consider the beginning stages of a disease and basically told you he's not going to help you until your organs start messing up you need another doctor. If you really have lupus and it is not going rampant anywhere other than your joints and such now starting you on basic medications to treat it can PREVENT those things from happening. Go to see another rheumatologist this guy sounds like a quack.

06-14-2011, 06:34 PM
Okay, first of all...that doctor was a JERK! With proper medication and follow-up many people with lupus live very long and full lives. I was worried when I first heard that I might be heading towards a lupus diagnosis and though I was warned by my doctor not to search the internet I did. The truth is there are still some mistruths out there. You need reliable facts. Try looking at your country, state or provinces Lupus association or rheumatoid arthritis websites for up to date information. I would also recommend trying to get a second opinion...and/or asking your GP to do some more blood tests.

I was diagnosed this Winter but if I look back at symptoms have likely had lupus for about 10 years. I have no kidney or lung involvement. I am just saying that to let you know that doesn't always happen.

I do think you need to find out if this is what you have as you may need to be on preventative medication. Once upon a time, doctors treated (and some still do apparently) lupus patients on a symptom by symptom basis, letting you fall into a crisis and then trying to make things better. Current thought is to prevent the crisis in the first place.

Many lupus patients live full and active lives...Others deal with more complications but the truth is it affects everybody differently. Not even the doctors can fully predict how it will affect you. A diagnosis of lupus is not a death sentence...it may be a kick in the pants....but there is so much more you need to learn about.

You said you are moving...try to get your GP to refer you to a rheumy in the next town or when you go to get a new doctor, tell them that you had just seen a rheumy but that they didn't do extra tests since you were moving and ask to be referred by them to a local one. Keep pushing. Unfortunately with lupus, we often have to be our own advocates.

In the meantime, take care of yourself. Try to reduce stress, eat well, exercise (moderately) when you feel up to it, reduce your sun exposure...just in case of a lupus diagnosis but also because these are good living practices for all of us.

06-14-2011, 06:43 PM
Thank you guys for responding, I'm going to take your advice and find another Dr when I get to Georgia. It has been very hard trying to understand it all, about 3 weeks ago I started becoming very nauseous and can't eat anything at all, that usually last a couple days then afterward every joint in my body hurts, I don't know if it's related, I've never had problems like this before. I've already had pleurisy and a chest infection, and I get kidney infections quite often, I always thought it was normal! And stress I have realized is really bad for me, It's hard not to when you have 3 children! Anyway, I really appreciate the advice and feel better about things.

06-14-2011, 06:52 PM
Thank you guys for responding, I'm going to take your advice and find another Dr when I get to Georgia. It has been very hard trying to understand it all, about 3 weeks ago I started becoming very nauseous and can't eat anything at all, that usually last a couple days then afterward every joint in my body hurts, I don't know if it's related, I've never had problems like this before. I've already had pleurisy and a chest infection, and I get kidney infections quite often, I always thought it was normal! And stress I have realized is really bad for me, It's hard not to when you have 3 children! Anyway, I really appreciate the advice and feel better about things.

I know I almost made a joke when I said :reduce stress: as that is easier said than done.

Ask them to do more blood tests, they can tell many things from antibody tests but even still you have to have a certain number of symptoms on a list too. It is apparently very hard to diagnose people with lupus. That being said, my diagnosis made me feel better in that I had an explanation for so many seemingly unrelated issues I had over the years.

Please take care...and know that I have been there. I was so scared by some of the first information I received...and since then have been so reassured by so many more people with lupus. How I explain it to those around me is like this. LUpus can have some scary complications but once diagnosed with a team of doctors to monitor you, with proper medication and education, things are a lot less scary. My symptoms are relatively "mild" compared to some ( in that I usually classify them as annoying rather than truly dangerous on their own), I have not be hospitalized from anything directly related to my lupus yet, so I know there are those who live a different lupus reality each day...But I have also "met" others like me. Until you talk to a reliable source (doctor), try to relax and just take things one step at a time.

06-14-2011, 07:49 PM
How long will it be until you get to Georgia? Can you try to track down a good rheumy on the internet and make an appointment now, so you don't have to wait as long once you get there? The rheumy you saw is disgraceful and probably shouldn't be practicing. He must not keep current or he would know that lupus is highly treatable, just not curable.

I have only been on this site for about a month, but I have grown to really care about the people here because they care so much about others. It is a very safe place to get information and support, whether you actually get a lupus diagnosis or not. The only downside is that you will tend to meet people whose lives have been majorly impacted by lupus. The folks whose lupus is under good control don't seem to hang out here much - probably because they don't need the support or they feel like they aren't "sick enough" to chime in. My point is that you can't assume that you will have the same complications that others here do. With the right medications, you may only have to make minor changes to keep your disease under control.

06-14-2011, 08:12 PM
Welcome to WHL. That doctor was really a jerk. Unfortunately, there are way too many of them out there. You've been given some really great advice.
I'm not sure where you are going in Georgia, but we have a couple of ladies here that live in or near Atlanta. As I remember, I think that they both go to a great rheumy there.
Try sending a PM to Nonna, or start a new thread with Atlanta, GA in the header. That should get Nonna to answer.

06-14-2011, 08:44 PM
I do believe we are all agreeing that your so called dr is an idiot! I too was initially diagnosed with arthritis. The doc listened to my symptoms and said "well if it walks like a duck and talks like a duck" I kid you not. In the beginning, I will say my symptoms totally followed RA. However, time went on, other symptoms appeared, blood tests finally done and NOPE, not arthritis! That meant either I was a hypochondriac or it was something else and that something else turned out to be lupus. Go to Georgia and find a real doctor. In the meantime, keep a diary of your symptoms. A detailed diary. Pain, level of pain, location, what you were doing when you were in pain, did you take anything, what was the weather doing, what did you eat. I'm serious! The more details you have, the easier it will be to solve your puzzle and help the doctor help you! Your diary is your evidence. Also while you are waiting, keep coming to this forum. Great group of amazing people here and lots of useful information and support.

06-15-2011, 02:13 AM
Hi Wendy, welcome to our wonderful family. I hope you stick around awhile(smile). Wow your doc scares me. I would definitely get a new rheumy. Meds are vital to quiet the AI system from attacking us. Why did he frighten the crap out of you and leave you to fend for yourself? I have had 4 rheumys in 5 yrs because of inadequacies. I finally have a decent one but I travel 2 hrs to get to her. Bless you in your journey. Hope you stick around as this group is awesome!

06-15-2011, 02:51 AM
hi wendy and welcome.
please read a few of the other posts.
there is good advice from other sufferers.

we are not doctors, but we all suffer from the same problem, our auto immune system is not working normally.

find a good rhuemy in georgia and book a visit.

06-15-2011, 03:36 AM
Yes Steve is so on. I read all that I can from this forum. I'm learning more from this Family than anywhere I have searched in 5 yrs. Thanks everyone!

06-15-2011, 05:34 AM
Hi Wendy,

A nice warm welcome to our lovely family of WHL and there's so many threads to venture through to learn what can be connected with Arthritis concerning Lupus.
I'm not being nasty but your Rheumo specialist is Totally of his head you can't diagnose someone with one thing then say another and send you off to search the internet plus to worry about 5-10yrs time. Lupus can be controlled good with the right medication to suite the person and also the Disease they have, he was way out of order.

The reason's he's told you this because your DNA, DS and Antigen are a prognosis for (Systemic lupus erythematosus) which i have myself and a good many member's on the site.

I'll add some info for you to read but i would re-phone up and request to see him earlier as he sounds a rheumo who can give you your results but is just fobbing you off.

((Hugs Terri)) xxx

06-15-2011, 05:37 AM
Symptoms of Systemic Lupus Erythematosus (SLE)


SLE symptoms may develop slowly over months or years, or they may appear suddenly. Symptoms tend to be worse during winter months, perhaps because prolonged exposure to sunlight in the summer causes a gradual build-up of factors that trigger symptoms months later.

Arthritic Pain
The most common symptom is joint pain, which occurs in about 90% of patients with SLE. Characteristics of this symptom vary widely:

•It is often accompanied by swelling and redness.
•It can last from hours to months.
•It may be mild or severe.
•It can occur in one joint, move from one to another, or flare erratically.
•Pain often occurs in the morning and improves during the day, only to return later when the patient tires.
•The joints most affected are fingers, wrists, elbows, knees, and ankles. (Joints in the spine and neck are not affected.)
Children may experience these symptoms as growing pains, and, in all patients, they may be the only symptoms for many years.

Fever occurs in 90% of patients with SLE and is usually caused by the inflammatory process of the disease, not by infection. It is low-grade except during an acute lupus crisis.

Skin Rashes
Three-quarters of patients with SLE have skin inflammation and skin lesions (ulcers, rashes, or other injured areas). About half of these lesions are photosensitive; that is, they are aggravated by ultraviolet (UV) radiation from sunlight, even from light coming through a window. (UV radiation may even trigger systemic flares in patients with SLE.)

06-15-2011, 08:14 AM
Wow, I'm truly thankful that I found this site :) You guys have all given me more insight on what is going on and what steps I need to take. I truly appreciate it! I've spent the last couple months terrified because I had no idea what to expect, I was thinking all doom and gloom, But you guys have given me hope that things aren't as bad as he made them out to me. I'm hoping to make it to Georgia in the next month, we were hoping that it would be sooner, but things didn't work out, I'm going to start looking for a dr and see what I can do. Thank you all so much!

06-15-2011, 08:25 AM
Hi Wendy,

Your welcome, that's what we're here for to love and support one another.

I saw your post about pleurisy i've had that several times and it's scared my left Lung and being stressed or having depression which i have, it thrieves off it and makes your symptoms feel alot worse than they are.

When your having blood tests Lupus loves playing with your bloods and fluctuates them and if you do have something it can show a negative reading instead, alot of member's are having this trouble and re-testing of bloods just carries on, it took 6mths for my anaemia to show it's true colours and refering your joint pain we seem to match on a fare bit.

Hugs Terri xxx

06-15-2011, 08:35 AM
I'm hoping that I don't have to go through the pleurisy again, that was one of the most painful things I have ever had to deal with. I also have stress and depression, I've been anemic for about 2 yrs now, Just can't seem to get it to go away now! I also have mouth sores..which once i get them, they take forever to go away. Still trying to decide if the ones I get are from lupus or just because! lol

I'm defiantly going to continue coming here :) It's good to know that there are people that can relate and understand things that you are going through :) make dealing with it alot easier!

06-15-2011, 08:50 AM

Pleurisy really does hurt and they checked my lungs for clots but i was lucky with that. I've been a manic depressive from 18yrs old and the Lupus does make me suffer with it and then the water works start going.

For your anaemia are you on B12 Jabs for life, i had anaemia a few years back now and it dropped rock bottom and they got me right and i've now got it again taking a folic acid tablet daily and B12 Jab every 3 mths for life.
You really need to becareful with the anaemia as that alone can make you feel ill and tied out.

The mouth sores are a big issue on the site besides mouth Ulcers, some have it with their meds and they can just happen from what disease they have conncected to the Lupus.

Wendy keep with us and keep we updated and if you feel low just come on and vent away mate as there's always someone on to answer being a worldwide site.

Terri xxx