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Anyone here with Lupus?

Anonymous
Posted by Anonymous
  • 73 Replies

I'm starting to think Lupus might be the explanation for all of my mystery medical issues. Since I was a child I've been diagnosed in a broad form of having an autoimmune disorder, but they've never been able to decipher which one. All my life I've dealt with outbreaks of hives and rashes. I've been through hundreds of allergy tests. All negative. When I became pregnant with ds, I startd having foot problems. They were always numb, cold, and sore. We chalked it up to circulation problems because of pregnancy, but it never went away. And now over the recent months I've been experiencing the "butterfly" rash, for no explainable reasons. Anyone have Lupus? Is that possibly what this sounds like?

Posted by Anonymous on Jan. 20, 2013 at 7:20 PM
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Replies (1-10):
crumpy_gat
by No. on Jan. 20, 2013 at 7:21 PM
1 mom liked this


Anonymous
by Anonymous 1 - Original Poster on Jan. 20, 2013 at 7:24 PM

Bump

tossed
by Ruby Member on Jan. 20, 2013 at 7:26 PM

I have lupus. What you have not mentioned that is classic lupus is pain. Every joint in my body screams in pain. If your ob is concerned, there are blood tests that can help with the diagnosis. They can biopsy the rash and determine if it is lupus. The numb and cold feet could have a number of causes...if they turn purple, it could be Raynard's Syndrome. The rheumatology association lists 11 symptoms and typically, to be diagnosed with lupus you have to have 6 (I think) of the symptoms. With that said, lupus is frequently diagnosed around the time of child birth. See a rheumatologist. What you have posted does not scream lupus to me.

Anonymous
by Anonymous 1 - Original Poster on Jan. 20, 2013 at 8:06 PM



Quoting tossed:

I have lupus. What you have not mentioned that is classic lupus is pain. Every joint in my body screams in pain. If your ob is concerned, there are blood tests that can help with the diagnosis. They can biopsy the rash and determine if it is lupus. The numb and cold feet could have a number of causes...if they turn purple, it could be Raynard's Syndrome. The rheumatology association lists 11 symptoms and typically, to be diagnosed with lupus you have to have 6 (I think) of the symptoms. With that said, lupus is frequently diagnosed around the time of child birth. See a rheumatologist. What you have posted does not scream lupus to me.

Thanks for the info! It sucks so bad to know that doctors know that everything is related the just don't know HOW!


tossed
by Ruby Member on Jan. 20, 2013 at 8:11 PM


Since lupus is primarily a "woman's disease" it is not high on the priority list for researchers. There has only been 1 new drug introduced in the last 50 years to treat lupus symptoms. What is really frustrating is having the disease and several other rheumatology disease and having little that can be done. I hope that your condition is not lupus. It is a bitch! Sadly, the doctors think both of my sons are displaying symptoms. One has been tested and has a high probability of having the disease and the other will be tested in the next month. They are 19 and 23. I was diagnosed at 32 after 15 years of doctors suspecting there was something wrong. Good luck.

Quoting Anonymous:



Quoting tossed:

I have lupus. What you have not mentioned that is classic lupus is pain. Every joint in my body screams in pain. If your ob is concerned, there are blood tests that can help with the diagnosis. They can biopsy the rash and determine if it is lupus. The numb and cold feet could have a number of causes...if they turn purple, it could be Raynard's Syndrome. The rheumatology association lists 11 symptoms and typically, to be diagnosed with lupus you have to have 6 (I think) of the symptoms. With that said, lupus is frequently diagnosed around the time of child birth. See a rheumatologist. What you have posted does not scream lupus to me.

Thanks for the info! It sucks so bad to know that doctors know that everything is related the just don't know HOW!




Anonymous
by Anonymous 1 - Original Poster on Jan. 20, 2013 at 8:21 PM



Quoting tossed:


Since lupus is primarily a "woman's disease" it is not high on the priority list for researchers. There has only been 1 new drug introduced in the last 50 years to treat lupus symptoms. What is really frustrating is having the disease and several other rheumatology disease and having little that can be done. I hope that your condition is not lupus. It is a bitch! Sadly, the doctors think both of my sons are displaying symptoms. One has been tested and has a high probability of having the disease and the other will be tested in the next month. They are 19 and 23. I was diagnosed at 32 after 15 years of doctors suspecting there was something wrong. Good luck.

Quoting Anonymous:



Quoting tossed:

I have lupus. What you have not mentioned that is classic lupus is pain. Every joint in my body screams in pain. If your ob is concerned, there are blood tests that can help with the diagnosis. They can biopsy the rash and determine if it is lupus. The numb and cold feet could have a number of causes...if they turn purple, it could be Raynard's Syndrome. The rheumatology association lists 11 symptoms and typically, to be diagnosed with lupus you have to have 6 (I think) of the symptoms. With that said, lupus is frequently diagnosed around the time of child birth. See a rheumatologist. What you have posted does not scream lupus to me.

Thanks for the info! It sucks so bad to know that doctors know that everything is related the just don't know HOW!





Thanks! Wow! Only one new drug in the past 50 years! That's pretty crazy! If you don't mind me asking, did you have any problems during your pregnancies? I cannot sustain a placenta, and they have no idea why, my last child had to be born at 30 weeks.

Sj218
by on Jan. 20, 2013 at 8:26 PM
My mother, aunt, grandmother and great grandmother all have SLE. I'm 35 and my doctors have yet to diagnose me, but I display the same symptoms that they do. The achy joints and fatigue is the worst because nothing really makes it any better. All of the skin problems are a pain, but I can have those symptoms treated one at a time. I'd be so happy to not be itchy and exhausted all the time though.


Quoting tossed:


Since lupus is primarily a "woman's disease" it is not high on the priority list for researchers. There has only been 1 new drug introduced in the last 50 years to treat lupus symptoms. What is really frustrating is having the disease and several other rheumatology disease and having little that can be done. I hope that your condition is not lupus. It is a bitch! Sadly, the doctors think both of my sons are displaying symptoms. One has been tested and has a high probability of having the disease and the other will be tested in the next month. They are 19 and 23. I was diagnosed at 32 after 15 years of doctors suspecting there was something wrong. Good luck.


Quoting Anonymous:




Quoting tossed:

I have lupus. What you have not mentioned that is classic lupus is pain. Every joint in my body screams in pain. If your ob is concerned, there are blood tests that can help with the diagnosis. They can biopsy the rash and determine if it is lupus. The numb and cold feet could have a number of causes...if they turn purple, it could be Raynard's Syndrome. The rheumatology association lists 11 symptoms and typically, to be diagnosed with lupus you have to have 6 (I think) of the symptoms. With that said, lupus is frequently diagnosed around the time of child birth. See a rheumatologist. What you have posted does not scream lupus to me.

Thanks for the info! It sucks so bad to know that doctors know that everything is related the just don't know HOW!







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ElitestJen
by on Jan. 20, 2013 at 8:27 PM

I have SLE.

tossed
by Ruby Member on Jan. 20, 2013 at 8:28 PM


Lots of problems. My first problem was in getting pregnant. I had PCOS, endometriosis, and fibroids. When I got pregnant, I did not have a high enough progesterone level and had to use suppositories and then daily shots during the first trimester. I developed carpal tunnel and pregnancy induced hypertension. I then developed toxemia and had to be on bed rest the entire third trimester. All of that was with the first pregnancy. The second pregnancy was better, still had to have injections during the first trimester and developed an ulcer. With both pregnancies I had severe headaches and digestive issues. I also bled the entire first trimester with both. The ob thought my 2nd pregnancy was probably a twin pregnancy because there were two sacs in the uterus, but there was no heartbeat in the second sac. I miscarried that sac during the second month. It was terrifying because we did not know if I would retain the pregnancy...thankfully, I did. Infertility and pregnancy problems are fairly common in lupus patients. I did not know that until after I was diagnosed...my second son was about a year old.

Quoting Anonymous:



Quoting tossed:


Since lupus is primarily a "woman's disease" it is not high on the priority list for researchers. There has only been 1 new drug introduced in the last 50 years to treat lupus symptoms. What is really frustrating is having the disease and several other rheumatology disease and having little that can be done. I hope that your condition is not lupus. It is a bitch! Sadly, the doctors think both of my sons are displaying symptoms. One has been tested and has a high probability of having the disease and the other will be tested in the next month. They are 19 and 23. I was diagnosed at 32 after 15 years of doctors suspecting there was something wrong. Good luck.

Quoting Anonymous:



Quoting tossed:

I have lupus. What you have not mentioned that is classic lupus is pain. Every joint in my body screams in pain. If your ob is concerned, there are blood tests that can help with the diagnosis. They can biopsy the rash and determine if it is lupus. The numb and cold feet could have a number of causes...if they turn purple, it could be Raynard's Syndrome. The rheumatology association lists 11 symptoms and typically, to be diagnosed with lupus you have to have 6 (I think) of the symptoms. With that said, lupus is frequently diagnosed around the time of child birth. See a rheumatologist. What you have posted does not scream lupus to me.

Thanks for the info! It sucks so bad to know that doctors know that everything is related the just don't know HOW!





Thanks! Wow! Only one new drug in the past 50 years! That's pretty crazy! If you don't mind me asking, did you have any problems during your pregnancies? I cannot sustain a placenta, and they have no idea why, my last child had to be born at 30 weeks.



tifbrown
by on Jan. 20, 2013 at 8:31 PM
A good friend of mine has Lupus of the brain, which is very rare. A combination of pregnancy and sun exposure caused a horrible flair up when she was pregnant. She almost lost her life and her baby before they finally figured it out. She is very lucky she made it, and still has complications as a result. But, at least she finally knows. Trust your gut, if you think something is wrong, pursue it. Eventually you will find a doctor willing to put in the work to find out what's wrong. Good luck!
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