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Deblynn
05-29-2006, 11:11 PM
I posted in the "introduction" section, and here is a list of my symptoms:

at 22 years old, while pregnant, I developed a horrible feeling on my left side of one rib catching onto another and locking (my ribscage was heightened by my pregnancy). I mentioned this to my doctor at the time and she was unconcerned. The pain was extreme and took about 30 to 60 seconds to pass. I still occassionally get the pain and have learned to stand up straight to alleviate it. According to my research, this coud be Pericarditis. It has worsened since gaining weight in the past year (25 pounds). I am about 30 pounds overweight.

About two years later I developed a condition, with fever, that made it hurt to breathe. My hubby took me to the ER, and because of my difficulty the doctor said it could be a blood clot. After X-rays it was found to be an infection in the lining around my lungs. In my research I discovered this is Pleurisy/Pleuritis. I have not since experienced this condition.

About six years ago I developed a rash in my right shin that I can see now is probably a Discoid Rash, but was diagnosed as an exema. It has never completely left but is subdued with steroid cream. I have had massive reactions to mosquito bites, especially as a kid. A poison oak out break and the only bee sting I've ever got both needed to be treated with cortisone shots. EVERYTHING that happens to my skin becomes infected, if not dealt with immediately.

About 8 years ago I had an episode at my work where my neck and right shoulder was affected (presumably work related), and my right hand became discolored. I took physical therapy treatment, cortisone shots and anti-inflammatory drugs which did not help. It was at that time my GP began to have concerns that I was "faking" my symptoms. Today my neck and shoulders have continued to bother me, and I've still had to have PT for my symptoms (after many years of chiropractic treatment--wanted to try something else) and my PT said she didn't know how I "did life" with my neck. Most recently my elbows have began to ache, and my left thumb seems very arthritic.

About 6 years ago two fingers on my right hand turned completely white after slicing lemons in a cold environment. I have learned that this is Raynauds. Some warm water for about 30 minutes alleviated the symptom.

Today I still suffer from weakness in my neck, shoulders and arms. For the pain I have learned to ice, take Motrin and exercise, but still the pain and weakness comes and goes. My mouth is dry often and sometimes I choke when drinking or eating (Sjurgrens). Fatigue is a normal part of my life, as I require at least one nap a day and can "lay around" indefinitely. style_emoticons/<#EMO_DIR#>/crying.gif I have dry eyes to the point they feel like cotton sometimes, and they are red just below the lashes.

Oh, the brain fog! I thought it was just 'getting older'. I can't remember names, have trouble articulating thoughts (my friends commonly finish my sentences these days) and I can't even concentrate enough to even read the newspaper anymore! I haven't read a novel in three years.

Depression is difficult and I have been fighting it on a daily basis for almost 6 years. I have NEVER been one to have pity parties, though I am quite hard on myself.

So, if I am not diagnosed with Lupus, where else can I look?

Almost hoping there is a condition that I can put my finger on, so I can begin the process of becoming informed, coming to terms with it and start the healing/dealing process. I am now beginning to understand how important it is to take care of my body, and feeling a need to share with others about these things!

Regards,

Deblynn
xoxo





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Lily
05-29-2006, 11:49 PM
Hi Deblynn and welcome to The Lupus Site.

Sorry you are unwell and arent sure whats happening style_emoticons/<#EMO_DIR#>/sad.gif Not a nice place to be and you need some answers. I suggest a referral to a Rheumatologist rather than dealing with your GP is more likely to reveal more about what's going on and whether Lupus is a possibility. There are a lot of tests he can run and take a full history to start investigations. So thats a very good first step.

I'm not very familiar with the 'warm antibodies' you mention in your Introductions post - there can be several reasons for them it seems and more investigation necessary. They are often associated with Autoimmune Hemolytic anemia it seems - how did your FBC check out?

Likewise about some of your presenting symptoms. Its especially important not to try and put 2 & 2 together and come up with 6. Without further testing and an expert opinion it can be easy to do that with all the information we as patients can access these days. Its a boon having that information for sure, but it pays to be cautious in trying to diagnose oneself.

Speaking from personal experience about the pericarditis, it does not sound like my episodes of it though. Standing up and straightening out certainly would not relieve the pain, in fact it would exacerbate it, and it usually does not come and go so quickly. But thats just my experience with it.

The pleuritis we get with Lupus is an inflammation of the lining of the lungs, not infection and often nothing shows on scans unless there is a pleural effusion, a collection of fluid.

With any skin rashes we generally consult a Dermatologist, there are soooooooo many different types of rashes and its really difficult to distinguish between a lot of them. If Lupus is suspected a biopsy can often yield results though, so thats one avenue to explore also.

Raynauds is a distinct possibility from your description, but not diagnostic in itself, many of us do get it though. Your eye and mouth symptoms - have you ever been evaluated by an Opthalmologist? They were the ones to discover my dry eye syndrome, they can test for it but they do take into account any medications you are on, some can cause dry mouth and eyes. A Shirmers filter paper test, a rose bengal staining and a thorough evaluation by an Opthamologist will reveal more.

I wish you good luck with your investigations and I hope you can find a good Rheumatologist to investigate thoroughly.

Take care,

love
Lily

halfpintfl
05-30-2006, 12:00 AM
style_emoticons/<#EMO_DIR#>/wavey.gif Hi Deb, it sounds like you have been having quite a lot of trouble
through the years. But it also sounds like you have been diagnosing yourself,
and that is the one thing that we must never do. For one thing, it is very
dangerous, because most often we are wrong. We are not dr.'s, and like
it or not, we must let the dr.'s do their diagnosing. You must start with a
Rheumatologist, and a Dermatologist for your skin. That is the best
advice that I can give you.


Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

Deblynn
05-30-2006, 08:55 AM
Thanks for your input Lily and halfpintfl!!

I have gathered a small bit of info on rheumatologists in my area, and hopefully my doctor will write a referral to get my first bit of bloodwork done there, since I have been diagnosed with arthritis in my neck, and have other arthritic symptoms. After consulting with a rheumatologist I will then seek the advice of a dermatologist for my leg rash.

I wasn't necessarily diagnosing myself, but rather just identifing with some terms I studied on your site. Definitely will take your advice and seek the opinion of a professional. The letter I received from the bloodbank really scared me, which sparked my interest in the Lupus disease.

Thanks again for your caring attention!

xoxo
Deblynn

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Deblynn
05-31-2006, 07:12 AM
Horray! I was able to secure an appointment with a rhuemetologist today, because I have a PPO and don't have to get a referral. The appointment isn't until August, but I'm on a cancellation list. I heard he is very good, name is Douglass Haselwood in Fair Oaks, CA (suburb of Sacramento).

Anyhoo, thanks again for the advice to seek a rheumatologist!

grateful in Sacramento,
Deblynn
xoxo

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helloos
05-31-2006, 04:08 PM
http://i39.photobucket.com/albums/e187/marianica/thGoodLuck.gif

Lily
06-01-2006, 01:26 AM
Well done, and good luck Deblynn style_emoticons/<#EMO_DIR#>/foryou.gif

love
Lily