View Full Version : Hello all! I am new

12-08-2009, 09:50 PM
I have pretty much been sick my entire life. Breathing problems and allergies through out my childhood. My mom was told when I was a preteen and hospitalized that I could have lupus.. but my sister was being treated for psoriasis at the same time and everyone leaned that way. The difference between her and I was that I couldn't be treated by UV Rays. They found that out after one session under the lamp. I had a lot of problems with my skin all throughout my life. We always assumed was hives and a warm oatmeal bath was usual treatments and another solution of Barac?? acid to open my eyes when they swelled shut. We didn't ever go to the doctor except when we required hospitalization.
I have had many problems with my joints throughout teen years to now. I was diagnosed with disc degenerative disease, blood clots, high blood pressure, had two pregnancies. I am prob forgetting somethings..
In 2002ish I became extremely ill and after almost two years of testing and feeling like it was all in my head. My doctor diagnosed lupus and referred me to my first reumy. He was ruff and had absolutely no bed side manner. I started feeling better and stopped going.
2009 New Year's Eve day.. my backwent out.. really went out again. This has turned out to be the worst year ever. Pain has become so severe. I have so much confusion. Some areas have become inflamed and sometimes red but always hot to touch. I have been sick and nautious. headaches. holes in various bones. calcium buildups. psoriasis outbreak severe. circles that burn over my back, hips, legs and arms. My hair started falling out. My right side is not right anymore. Shaking while asleep that I can't control even when it wakes me and R. Worse vision prob.. floaties are back with avengence. blah blah my list could go on forever. Mostly because I can't break this one and meds haven't been helping.
Thanks for listening to my fear.

12-08-2009, 09:52 PM
Oh and most of all I have become extremely exhausted. There are days when it is so hard to pick myself up even if only for a little while. Oh yah.. confusion.. i have a hard time remembering new news.. I write most things down.
Thanks again for listening.

12-09-2009, 06:40 AM
Welcome to WHL, boy, I am so sorry to hear of all that you have and are going through, I know a lot of us have some or quite a bit of the symtoms that you describe, (I have the brain fog, extreme fatique, joint & muscle pain, bad and mostly non stop headaches, eeewwww), You will be welcome here. there is a lot of knowledge in this group, some from profesiona careers and others from living and dealing with this lovely disiease we call lupus so enjoy the site and God speed on a cure for all. Also there is another post on a new lupus drug called lupuzor, might be worth checking with your rheumy about. Good luck and God Bless, sincerely, Jim.

12-09-2009, 06:46 AM
Go to rss feeds and lupus news and then I think it is the thread on immunopharmacy, I can't remember all of it right now and its only been half a minute since I looked, somebody say lupus fog?

12-09-2009, 06:51 AM
OK, try this thread, ImmuPharma Announces Final Results Of PhaseIIb Study Of LUPUZOR? In Lupus. I finally remebered what the copy and paste was for, wow, I still have to go to work and teache adult students. Oh well, hope this helps. Jim.

12-09-2009, 10:55 AM
Hi Susan and welcome to our online home sweet home. Glad to have you as part of the WHL family.

It took a very long time to get your dx. I'm so sorry you're having such a horrible year. This past year has been my worst also. I'm hoping and praying we all have a better year in 2010.

My dx is MCTD but my pcp believes I have lupus, sjogren's, and Fibro.

Have you found a better rheumy yet? Or are you relying on your pcp mainly for now?

12-09-2009, 03:39 PM
Thank you Scubagramplit for your knowledge. I wrote down lupuzor to mention to my reumy Friday. I will keep my fingers crossed for this one. Thank you again.

Thank you Abbasgirl.. it has been a journey. Some days are better than others that is for sure.

I did get a new reumy that I just love. He is really old and refuses to retire until someone as qualified can take over for him in this town of 80 thousand. There is a long waiting list and he can't take everyone on as a patient. I was fortunate that he took me on immediately. We have an isotope shortage here in Canada and he ordered this certain bone scan done for me. It was in the news that wait time on this scan was indefinite. I got a call the next day to go in the following day. He is taken very serious and priority.

When I got cortizone injections last week he sang a little song in a quiet hum about a field mouse and a rooftop. He is always joking and in the best of spirits. I just adore him and the rest of his staff. It is such a nice atmosphere there. I had to go to emergency at hospital a couple weeks ago. He told me that at any time I can go to the office without an app. If I call the office they take me in right away. His waiting room is always full and sometimes he looks more tired and stiff than us. He never rushes but is always on time. The longest I have waited in waiting room past appointment is 10 minutes.

He always makes me feel better at least mentally. He gives me hope.

He is a bit forgetful and that used to worry me. His staff is educated and diligent in checking over sripts.

He is a very respected doc here and he can't take everyone in so I am very thankful that I am so fortunate. lol I love my doc. everyone loves him. He is real.

Thanks again for the welcome you guys. It doesn't feel so lonely anymore. Thank you :D

12-10-2009, 03:40 AM
hi lissa
Welcome! I am so sorry you are dealing with so much! I am right there with you as are all of us here I am sure. The extreme fatigue SUCKS! just plain sucks! I too had bad joint problems as a child and teen. I also had hives or what I thought was hives. Dr thinks now it was the lupus all along. Now I get the malar rash from flourecent light at walmart and my dr. got to see that as I had gone to walmart before my appointment. He said to wear a hat and sunscreen. I hope that u ind this site as helpful as I have and many others. I love all the support here!

Take care
gentle hugs!

12-10-2009, 07:55 AM
Wow, Susan...you have an awesome rheumy!!!! I wish there were many many more like him. And he has a good staff too... I'm floored. Wow!

My pcp is forgetful at times too, but I wouldn't give her up for nothin'! She's the one that suspected something systemic going on and ran lab work. If she hadn't I think I would still be stuck with doctor after doctor shrugging shoulders at me, and blaming most of my problems on "bad nerves" as they call just about everything that ails ya' in the south. :wacko:

I'm glad you don't feel so lonesome anymore. This site is very comfie and has helped me tremendously. I love this gang. There are also social groups and an arcade. Jump right in.

12-11-2009, 09:29 AM
I think that we are all a bit envious of your rheumy. He SINGS to you??? Oh my gosh. Having a good doctor can make all of the difference in the world (as you know having dealt with a bad one). That means you don't have to convince him that there is something wrong, that he doesn't dismiss you or tell you that it is your hormones or just all in your head!
I am so sorry that you had to endure so many years of symptoms that seem to be related to lupus and to some overlapping issues too. But, I am glad to hear that your doctor is treating your symptoms and I hope that they get to the point where they are manageable.
In the meantime, we are here to help you as much as we can! I am glad that you are here so that you will know that you are not alone. Welcome to our family!

Peace and Blessings

12-12-2009, 03:44 PM
hi my names kim l and i am from australia welcome to our site we will be there to support you as much as possible the people here are wonderful i have made many great friends this year has been bad for a lot of us i now walk with walking stick and i have bought myself a corkboard and i pin all my appointments and things i need to remember on it as the brain fog is extremely bad i am glad you have god rheumi i finally found a good one after months of being told it was all in my head and it was only my nerves they can be so condesending sometimes we knows whats going on in our bodies sometimes its just hard to get them to listen. well have a merry christmas if we do not get to talk before then good to have as part of our unique family hugs kim l

12-13-2009, 11:02 AM
What is MCTD?

12-13-2009, 08:17 PM
MCTD stands for Mixed Connective Tissue Disease. It's what the rheumy tags you with if they can't figure out just one disease from your blood work. In my case, I tested mildly positive for Lupus, Rheumatoid Arthritis, Psoriasis and Sjogren's (with a little Raynaud's thrown in for good measure). When you have overlapping symptoms of several AI diseases, it's called MCTD. As I've read, sometimes one of them will develop into something full-blown, so then the doc changes the diagnosis.
Hope this helps,

Angel Oliver
12-14-2009, 07:50 AM
Just to say helo and welcome.Im sorry you have been through so much,but glad now you have people who understand to chat with.I hope today is a good day for you.

Lots of love

12-14-2009, 08:20 AM
hi susan,

welcome to our family....you have already seen how much compassion and knowledge there is among our members, and i hope you find comfort in our responses.

WOW, what a great dr. you have....i hope he never retires. I will keep my fingers crossed that his replacement will be as caring as he is.

What medications are you taking? I am so sorry that 2009 has been so tough on you, and hopefully 2010 will be the year that we all start to feel better.

Anyway, welcome, and i look forward to learning along with you.