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mechiko
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 1/8/2011 12:54 AM (GMT -6)   
I'm trying to organize my thoughts for an upcoming rheumatologist appointment, and per suggestions from members here (thank you!) I made a list of all my symptoms in chronological order... as best as I can remember, anyways! I've been having a lot of difficulty remembering things.

The problem is, since doing this and researching symptoms online, I am starting to feel crazy. Do these symptoms even remind you of lupus? Here they are:

2007 Raynaud’s disease

Lactation ceased

Iritis progressing to uveitis → resolved with methotrexate in 2008

Miscarriage

2008 Abdominal pain not correlated to diet

Pelvic pain

Dysmenorrhea

Arthritis progressing to polyarthralgias

2009 Fatigue

Fractures occurring after minimal trauma

Bursitis/tendonitis resulting from intramuscular injection

2010 Dizziness

Low-grade fevers, feeling flushed and chilled

Near-syncope

Headache

Confusion and memory loss

Pleuritic chest pain

Symptoms of flare worsen with sun exposure

Decreased appetite and occasional nausea

Weight loss

Hair loss

Sores in corners of mouth

Bone and muscle pain accompanying severe joint pain during flares

Activity intolerance with dizziness, shortness of breath, chest pain, and palpitations

Chest pain and kidney pain occurring with acute infection

2011 Numbness, tingling, and burning sensations



Well there ya have it. Any input greatly appreciated!


Kathryn

Sha49
Regular Member


Date Joined Nov 2010
Total Posts : 27
   Posted 1/9/2011 9:36 PM (GMT -6)   
I haven't been diagnosed with anything other than sjogrens for sure right now, but my rheumy thinks there is an overlap of things...one being Lupus. I will know soon...probably before end of month.

Your symptoms match mine a lot minus a few and add a few:-)

Hope others with a dx of it will chime in for ya!

Sha
Identical twin. 35 yo. Married w/5kids. dx sjogrens w/+ SSA, ANA, scheimer test. Joint pains/swelling, dry mouth, change in taste/hearing, dry eyes (got plugs in now), neuropathy in feet and hands, lower back pain, vibrations in back, brain fog, weird rashes that peel and look like a sunburn, fatigue, etc:p Just got 44 vials of blood drawn, xrays and lip biopsy to try to get a dx thinks an overlap

mechiko
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 1/31/2011 11:17 PM (GMT -6)   
Well, I saw my rheumy again and he said that he doesn't quite know what to do with me - he wants to send me to Seattle to another rheumatologist who might have more experience with the less common rheumatic diseases. He took me off of Plaquenil, which didn't seem to be helping any. He also started me on fludrocortisone, hoping it might help with my dizziness and near-syncope. He thinks that I have pericarditis as well as pleurisy, peritonitis, arthritis, basically inflammation everywhere, but he doesn't know what do try next since the regular meds aren't keeping it under control. I'm also on methotrexate and Humira, and prednisone when I need it (which lately is all the time, but anything lower than 20mg/day doesn't help so he wants to keep me off of it as much as possible).

Anyone know a good rheumatologist in Seattle?


Kathryn

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/4/2011 8:11 AM (GMT -6)   
Kathryn, your symptoms are all associated with Lupus....of course it too can be other things but if you are diagnosed you will notice a long, long, list of health issues that can be tied to Lupus.

Mine started with sun sensitivity, then it was my eyes swelling, forehead over eyes as well. Thought I had allergies!

Every person with Lupus will suffer differing symptoms.....that's what makes the disease so hard to "pin point" when you first begin seeking treatment for "problems".

Nope, you are not crazy......Lupus can affect EVERY part of your body...from skin, to eyes, to joints, to brain, etc.,

If you realize that this auto-immune disease can affect all parts of the body you will recognize that with your long list of symptoms that you are not crazy. It is overwhelming at first but as you begin to learn about the disease you come to terms with each symptom as it comes.

It will be important for you to keep a "log" of your symptoms, any changes in symptom, etc., as this helps the Rheumy determine the course of your treatment.

Best of luck to you......

mechiko
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 2/4/2011 10:09 PM (GMT -6)   
Thanks for the reply. Each time I look up a symptom, "lupus" is near the top of the list of possible causes.... right now I have 3 of the diagnostic criteria, I would really like to have some sort of diagnosis but then again I definitely don't want any more symptoms! As of talking to my rheumy last week, I can add pericarditis and peritonitis to the list. Rheumy said he would consult with his colleagues about my case and see if anyone had ideas as to what it could be or how to treat.

I am nervous about stopping the Plaquenil. I was on it for 10 months and it didn't seem to help at all, however I am scared that maybe it was helping and I just didn't know it.


Kathryn

Hickoryone
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/5/2011 9:00 AM (GMT -6)   
Most people with Lupus have to try several differing treatments and treatment combinations to get results.

Not every medication used to treat Lupus will help you specifically but could be a complete "God-send" for another.

Some will work but the side effects will be so profound that you won't be able to or will choose not to use them......

I have many side effects from my current meds but it is worth it for how I felt prior to the meds was far, far worse. I may get tired of the side-effects at some point and want to change....that is your right.

It takes about 3 years on the average to get a diagnosis for Lupus....it is sooooo much (symptoms) like other immune diseases; I got lucky with a 79 year old Nephrologist (despite no kidney issues whatsoever) who happened into the facility and saw my case. Although not a Rheumy.....he is well aware of Lupus as he is a Kidney specialist and Lupus can affect kidneys.

He even sits in on my video appointments with my Rheumy from downstate! He does this to be on the same page with meds, thoughts, etc., and to me this is priceless.

My hope is that everyone suffering and undiagnosed finds that "angel" to help them, stick with them through it.....it makes it that much easier in dealing with such a chronic disease process.

Best wishes to you!
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