Trying to get a diagnosis but no one is believing me

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psalm5117
New Member


Date Joined Jan 2016
Total Posts : 1
   Posted 1/1/2016 2:31 PM (GMT -6)   
Ever since November I have noticed my left hand looked sort of swollen. I brushed it off. Soon i began to have SEVERE dry mouth--so bad I kept guzzling water thinking I was dehydrated (Sjorgren's perhaps, my eyes are also dry and itchy). My mouth is barely making any saliva. I had to buy Biotene spray which barely helped.

Soon after that I began to have unexplained pain in the joints of my fingers and legs and feet upon waking up--like bad cramps. My right hand also is swelling now as I type this. I went to my doctor this week and did some bloodwork and my ANA came back negative but my C-Reactive Protein came back slightly high. My doctor says if I experience any further symptoms persist to follow-up. But I really do feel like something is not right. I even have the lupus malar rash (see pic) and I feel sick. What should I do next? My family doesn't even believe me. I have the rash and swollen fingers to show for it, and no one is believing me. I feel scared.My family does not believe I feel sick, saying I am just being anxious. I don't think anxiety would make my fingers swell like vienna sausages and make my knee caps hurt.

I felt so sick last week I couldn't get out of bed for a long time. I also had chills and a small fever the first day it was really bad with the severe dry mouth. My doctor sent me my results saying if symptoms persist to follow up. How long do I wait to follow up? I am listening to my body, and it is saying something is not right.

Tell me, does this look like lupus to you? VIEW IMAGE

VIEW IMAGE

Here is a better picture with light. Can you see the red? Does it look like the butterfly rash? Or am I going crazy?

VIEW IMAGE



I was so sick last week I lost all color to my face and I had awful chills. I felt really ill. What should I do? My ANA came back negative so no one thinks i have an issue. The only thing I have to speak for me is my C-Protein which says there is inflammation in my body.

Post Edited (psalm5117) : 1/1/2016 1:36:43 PM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/2/2016 9:43 AM (GMT -6)   
It is best to leave the diagnosing to the Drs! That said, you can have Lupus even with a negative ANA. (97 percent of those with lupus will have a positive ANA test.) And certainly you want to discover what is causing the inflammation.

What kind of Dr are you seeing? It's helpful to list, succinctly, your symptoms on a piece of paper for the Dr to look at. Often when we talk about them it isn't as clear as a list might be.

Here are the symptoms that lead to a Lupus diagnosis. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease.

The most common symptoms of lupus, which are the same for females and males, are:

Extreme fatigue (tiredness)
Headaches
Painful or swollen joints
Fever
Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
Swelling (edema) in feet, legs, hands, and/or around eyes
Pain in chest on deep breathing (pleurisy)
Butterfly-shaped rash across cheeks and nose
Sun- or light-sensitivity (photosensitivity)
Hair loss
Abnormal blood clotting
Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
Mouth or nose ulcers

Many of these symptoms occur in other illnesses. In fact, lupus is sometimes called "the great imitator" because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 51
   Posted 1/3/2016 3:32 PM (GMT -6)   
Lynnwood is spot on. Lupus "symptoms" can be similar to many disorders. This is why it takes so long for many to get a dx.
And no, actually the rash does not look like a malar rash to me. Try to relax and stop googling symptoms. One symptom on google can open up a huge can of worms.
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