Discussions By Condition: I cannot get a diagnosis.

Another list of mysterious symptoms

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • December 15, 2006
  • 09:39 PM

So, it's been 2 1/2 years since my symptoms first appeared with a strange rash on my trunk, muscle pain, extreme fatigue, chest pains and painful sores in my nose.

My GP ran bloodwork, which was all normal, except for a high SED rate and CRP. I saw a dermatologist who had never (in 25 yrs) seen a rash anything like what I had. I saw a Rheumatologist who didn't have much to offer.

Since then, more symptoms have come and gone,
nausea for a month that caused me to drop 15 lbs.
numbness in my toes for two weeks
vision disturbances-straight lines seem to jump around
memory problems
other misc rashes on my arms
my thyroid grew 1/4 inch and then shrank back down
blood pressure jumps around from 90/60 to 105/98
a painful lump on my upper thigh, which hasn't gone away

All the while, the original symptoms have also been coming and going, except the nose sores, which are almost always around. During this time, I had a baby with no complications, and actually felt very good the entire pregnancy.

I asked my doctor to do blood work for Lupus and Wegener's Granulomatosis, which were both negative.

Thanks for reading!

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4 Replies:

  • The high SED rate might explain a lot of your symptoms. You should talk to your doctor about getting an examination of those lumps, though, whether it be just a look/feel, or as much as a biopsy.
    eleven 55 Replies
    • December 15, 2006
    • 10:55 PM
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  • I haven't had quite the severity of symptoms as you, however, I had my toes on my right foot turn purplish-black about 2 years ago. Went through a battery of tests, finally got a biopsy done and it came back that it could either be chillblains or lupus. As I was pregnant at the time and had 2 lupus tests done, the derm decided it was chillblians.Since then I have had a rash that affects some part of my body, usually upper, altho sometimes the knees, for the last year and 2 months. I ALWAYS have the rash somewhere. It will go away, say on my arms, but appear on my chest. If I get it on one arm, it is on the other arm as well. If I get it on one side of my neck, its on the other side of my neck. I've had shortness of breath. I believe I get vision disturbances... Its just like seeing something out of the corner of my eye.I recently had a biopsy done on part of the rash, to try to diagnosis lupus.They wouldn't give me a definitive diagnosis because of the absence of interface change. The derm. said to come back in a couple months and we would try the biopsy again to diagnose it as lupus.In my understanding, it can sometimes take a couple years to finally get the diagnosis of lupus. In my case, after all my extensive research online and all the battery of tests, I believe that its lupus. However, I can't get the diagnosis. For you, it almost sounds like lupus to me. alot of your symptoms sound like mine.If you find out any additional information, or any other possibilities to look into I would love it.
    Anonymous 42789 Replies
    • December 16, 2006
    • 05:30 PM
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  • Have you been tested for lyme disease?? Not everyone gets the bulls eye rash or even notices they have been bitten. When I got the first bite almost 20 yrs ago it looked more like a big bruise....The docs dismissed it as such, a briuse. And it was forgotten abt. Then all sort of wacky symptoms kept happening. But all tests were neg. Abt 5 yrs ago things got so bad the docs thought I had ms. Then said it was fibro. two yrs ago I tested pos for Lyme. Then got bit again this June, It did the same big bruise mark and I remembered the mark of yrs ago. I am now getting treated for it and improving. Its been said many have misdx'd with other things,and are now finding out they actually have chronic lyme. Because some dr's didn't believe it was all over the US , not only on the east coast. The western blot test is the best one, as the others have a lot of false negs. Much of what you have written sounds similar to what I had. Best wishes.
    Anonymous 42789 Replies
    • December 16, 2006
    • 07:17 PM
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  • Have you been tested for lyme disease?? Not everyone gets the bulls eye rash or even notices they have been bitten. Nope, I haven't been tested for Lyme Disease. The GP that I saw did suggest it, but when I said I didn't have the bulls eye rash, he thought it wasn't a possibility. Thanks to everyone for your suggestions! I appreciate it.
    Anonymous 42789 Replies
    • December 16, 2006
    • 11:27 PM
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