View Full Version : The "undiagnosed hell"

09-10-2009, 08:43 AM
Hi everyone,
This is Deb, I joined about a month ago and in my initial post, I had mentioned getting a bx on a lesion I had on my face. Well, that came back inconclusive, so the derm. wanted me to come back in when I had a fresh one appear. A "fresh" one showed up a couple weeks later, and she did 2 bx's and they came back negative for the immuno flourescence test. Back to square one. Since then, I have developed the malar rash... but my lesions are decreasing in frequency. My derm thinks I do not have discoid lupus, but is not sure she'd rule out SLE.
So, now my gp has had a bunch of labs run on me (arthritis panel, thyroid, iron, etc) and it all came back normal, except for a low b12. Ugh.
I'd just really love some kind of reason for all of these pains.
here is a list of my current symptoms:
low b12
lesions on face and arms
sore in mouth, nose
toenails falling off, after my nailbeds turned a reddish color
night sweats
joint pain: hands, feet, back
chronic hip and shoulder bursitis
malar rash
insomnia(but, I do have a baby to add to that issue:laugh:)
hair is falling out at an alarming rate (this has happened after each pregnancy I've had, but this is lasting longer)
photosensitivity: headaches in bright light (like the grocery store)
dark patches on my shoulders that don't fade, blisters if I am out in the middle of the day, fatigue is worse the next day or two if I am out too long in the sun. ( went to the amusement park with my boys in June, out all day in the sun, and was out of commission for the next 3 days. This is when the blisters, and stinging began)
I had 50 spf on and a baseball cap. Had never had a reaction like that before, but this is my reaction to sun all the time now.
occasional abdominal pain (double over pain, right upper quadrant)

Does this sound like lupus to any of you?? It sure does match the research I have done. I'd love to get dx and start a treatment.
Anyone recommend a rheumy in west michigan??
Thanks for listening. I know this is long. I just don't know where to go from here.
Love to all of you,

09-10-2009, 10:47 AM
Hey there Deb,

It's hard to say yes or no in regards to lupus with the limited info we have talking to each other here. But, I will say that I was diagnosed with SLE in 2004, and I have had many of those symptoms-

Mouth Sores

Forgetfulness (brain fog)

Joint pain nearly everywhere

Chronic Bursitis in my right shoulder

Severe Fatigue

Extreme Sun Sensitivity

Alopecia Arreata-two patches of hair fell out on the back of my head suddenly. That was the symptom that was the final piece of the puzzle for me, and led to my SLE diagnosis. I have never had the Malar Rash on my face, but it is a very common Lupus symptom.

Sorry I can't recommend a good rheumo in Michigan. I think we have a couple of members here from that part of the country, hopefully they can help with that. I hope you get a diagnosis one way or the other. Being in diagnostic limbo is no fun.


Angel Oliver
09-10-2009, 11:07 AM
You sound similar to me and i have no diagnosis either,well of Lupus anyway.I was told i have Lupus then he changed his mind,now i have to wait.But for me I have just been put on Plaquenil,first meds to help me since 2004 so i am lucky today.
I hope you find a good rheumi soon and get a dx soon. Oh what a difference a name can make,then you are given help with meds.....just wish the diagnosis came much sooner to many.
Thinking of you and welcome.

love nhugs

09-10-2009, 01:29 PM
hi deb,

i agree with rob and angel, your symptoms certainly coincide with many of us. I deal with all of the symptoms that you listed, except my toenalis have not fallen off. my big toe nails pulled away from the skin and creased, but i have not lost them.....this happened 13 years ago, and they are still the same.

i give myself weekly injection of vitamin b for fatigue and to keep my levels up.

anyway, welcome deb. i am glad you are here, and we will help you work through this diagnosis process....treatment is around the corner.

09-13-2009, 07:14 PM
headaches, fatigue, sores in mouth (tongue, gums, on the sides of mouth), brittle nails, disturbed sleep, brain fog can also be caused by b 12 deficiency. b 12 deficiency can be very serious if untreated and can cause neurological damage even. i believe but I am not sure it can be treated with one week of shots and then there after monthly shots. also when I had a baby I would get night sweats and the doctor said it was caused by the rapid hormone drop. I am just listing other possibilities. I dont know much about lupus because I am new to this site but I am not new to diagnostic limbo. 7 years now. I hope you find answers, dont give up.