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View Full Version : Not Diagnosed but have some questions....



Mommyof1
02-09-2009, 12:24 PM
I have been trying since sept. to find out what is wrong with me. Ive been through a rheumy and now im on my second pcp and am making a trip to my neurologist this month. I was wondering if any of you lupies out there have a malar "flush" as opposed to the usually bumpy kind of rash. I get flushed in the butterly pattern on my face and have also gotten it on my arms and chest. It tends to burn at times but it doesnt stay. It comes and goes staying at most for hours at a time. I have also gotten stinging/burning on the back of my neck and other areas. I get the burning pain from my knees up into my lower back. I know most of my symptoms are neurological. I wanted to know if anyone has flares similar to mine:

The last two times I was sick then got mouth ulcers on and off for a month straight. One or two would go away then another one or two would pop up. After that my symptoms came in full swing. They never really go away just arent as bad. The first time I had problems with allergies or a cold and a uti. Im not sure if that was what caused the flare or the flare caused it. This time it was a head/chest cold and an ear infection. I do believe stress is another big trigger as I have a 20 month old son and am in school fulltime. I present in flares with the following:

-rash looks like sunburn on cheeks, nose and arms/chest and sometimes ears.
-mouth ulcers
and most of these symptoms tend to be present when i wake up in the morning and throughout the day:
-muscle weakness(it takes me a while to be able to move well)
-burning pain in legs sometimes with an ache
-tingling in hands
-whole body is shaking(trembling not violently)
-mouth is dry
-fatigue
-sharp intermittent pains in joints and body
-sweaty palms
i also suffer from cold hands/feet with color change so im assuming its raynauds, hot hands or feet with burning/slight swelling. I had seizures at 15 with no reoccurence or explanation and still have abnormal brain waves. I am sensitive to heat and fluorescent lighting with the rash and I have trouble focusing/short term memory etc. Anyone that can relate or has any suggestions please let me know. I have been tested for ana, antism and antidna. Both were negative ana was positive last drs appt when i had the uti so idk if that caused it or not. I was anemic and iron deficient which was treated with meds and is gone for now. Thank you for your time. -Brittanee

Mommyof1
02-09-2009, 12:26 PM
Sorry I forgot to mention in the past few months I have also developed constant tinnitus(ringing in the ears). and I wake up with pressure headaches as well if I didnt mention it already. Thank you and sorry! lol Hope you all are well.

mountaindreamer
02-09-2009, 04:25 PM
hi mommyof1,

I am so sorry to hear of your symptoms. Sure sounds like Lupus, but as I have learned from experience, diagnosis can take forever. I have learned from this forum, that these same symptoms can be other things....it all seems to be dependent of the tests.

hope you can find some relief, you certainly are due.

share a smile today

Saysusie
02-10-2009, 12:09 PM
It does sound as if you could have Lupus as well as a co-existing disease known as Raynaud's Syndrome, Fibromyalgia and perhaps some central nervous system involvement. Almost all of us suffer from anemia and low iron..that's kind of standard.

As Mountaindreemer mentioned, it is very difficult to diagnose auto-immune disorders and Lupus is one of the most difficult auto-immune disorder to diagnose. It can takes months to a year before we get a definitive diagnosis. The malar rash can look like a flush (my butterfly was never a rash, more of a raised red area).

Have your doctors ever considered testing you for an auto-immune disorder? If not, perhaps you can ask that they do so. Some tests are specific and can be helpful to them in making a diagnosis.

I wish you the best and hope that you get some answers soon.

Peace and Blessings
Saysusie

sick n tired
02-11-2009, 08:53 PM
Hey Mommyof1,

I have the flush and not the bumpy rash.

It takes a super long time to be dx'd at times. I can't tell you how long it has been for me because for at least 10 of the years I was told it was all in my head. All I know about Lupus a year and a half (when I was diagnoses) ago was it was incurable...
I do hope you find a doc who will listen to you and not treat you like you are making it all up.