Could this be?

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northcoastgrl
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 4/28/2012 12:57 PM (GMT -6)   
History: When I was two days old I developed a rash on my left arm, being a military hospital nothing was done they termed it a birthmark. When I was about 5 became pretty ill, they tested me for Lupus due to the rash being a typical sign, it came back positive then six months later they tested me again it came back negative, they told my mother it was a false positive.

Currently, I am 41 have had times in my life where I have had major medical issues, my rash never growing or moving. Now i have been seeing a Dr since January, they told me I had fibormyalgia but I have been having problems with my gallbladder area and all tests came back negative. Since January of this year this rash that has never moved before is now all over my right arm, my hands, my shoulders, my neck and my face. The rash is little (pin size) red dots that blanch when pressed. However now they are not just a few they are in great numbers, i also have white spots in all the same areas.

My other Dr told me that I was depressed and that was my only problem. I have since found a different Dr and have an appointment with a dermatologist but was curious if anyone has any clues what this might be? Can it be Lupus and it remained dormant for so many years and gave a positive then a negative? Just curious my mom is the one who told me that I needed to bring that up to the Dr. and he didn't seem to think it was anything worth noting.

Any help would be greatly appreciated.

northcoastgrl
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 4/28/2012 1:06 PM (GMT -6)   
I should note that there are a list of symptoms that seem to feel as though they are a mile long. Which is what brought out the Fibro diagnosis. But these two listed do not appear to be symptoms of fibro. Sorry

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/28/2012 4:00 PM (GMT -6)   
Have you seen a rheumatologist? Has an ANA test been done recently?
Joy

northcoastgrl
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 4/29/2012 12:54 AM (GMT 0)   
I have not I have terrible insurance so I have had to go through all the steps, I have seen a bone Dr. for my back and joint pain they have ruled out arthritis, now I am seeing a dermatologist and based on her opinion I will then be able to see a Rheumatologist after I complete a class that is 6 hours long about fibromyalgia (I am not doubting that it might be fibro however, there are some issues that are not consistent with fibro such as the rash, abdominal pain, massive hair loss and a constant low grade fever). I have not had an ANA as of yet, they have done just about every other type of blood work out there and there are some that are at the lowest low and the highest high for being normal for example my CREATINE KINASE is at 31, ALKALINE PHOSPHATASE is at 128,things that were high WBC is 13.5, Platelet is 475. And my Vitamin D was Deficient coming in at 7.

My main thing is that my current Dr. did not seem to think it was worth noting that it was a concern when I was a child and the rash grew and then stayed in the same area for 36 years and now is moving, so should I even bring this up with the dermatologist. I am not sure, maybe I just don't have a good Dr. I already fired one for telling me that I was depressed and that was my problem but to get a new Dr. is a lot of work.

Honestly there is so much going on I am not sure what is important and what is not to let my Dr.'s know.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/28/2012 8:25 PM (GMT -6)   
keep a list of all symptoms let the doctor determine what's important
Joy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/28/2012 8:30 PM (GMT -6)   
Let your doctor know EVERYTHING - they are the experts and when we keep information from them we keep them from doing their best work. They know what is important and what isn't -- we don't! That's why we should share as much as we can think of....make a list of symptoms, when/what/what else was happening, questions, etc.

Take a look at the Lupus Resources thread (linked from my signature) -- it includes a list of what to have ready for the doctor - although it was written specifically for lupus and a rheumotologist, the same advice holds true for almost any Dr or situation. I'd just mention that the rash was the same - inactive - for 36 yrs and has recently started to spread/change. Since you don't know what the test was, exactly, it is probably not relevant this much later.

Best wishes, let us know how it goes.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4415
   Posted 5/1/2012 1:33 AM (GMT -6)   
You clearly have Vitamin D deficiency, which is linked to autoimmunity. I'd strongly suggest discussing Vitamin D supplementation with your doctor!
-Razzle

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Claritin, Singulair, Andrographis & other herbs, homeopathy, supplements, etc.

northcoastgrl
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 5/1/2012 11:45 AM (GMT -6)   
They have placed me on 50,000 iu of Vitamin D once a week for 8 weeks, I am 5 weeks into this and nothing is getting better, they are going to recheck my Vitamin D in 3 weeks

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/1/2012 5:22 PM (GMT -6)   
I understand how you feel with the D problems. I was an 8 before I started my pills. I'm up to a 28, but still low.
Joy

northcoastgrl
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 5/4/2012 4:02 PM (GMT -6)   
I wanted to thank all of you for your answers, as of right now I still don't have an answer.  The ANA test came back negative, however due to the pains in my abdomen they did a CT scan and found a mass on my pelvic wall.  Needless to say I am a little scared right now and yet relieved at the same time to find out it is not lupus.  I will know more Tuesday when I go back to the Dr. to get the results of more tests to find out what that is.
 
Thank you all again
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