Anyone else...?

[Rushchick10]

So, after 9 months of messing around with this weird skin rash I develop on and off, the doctor is thinking that I have Lupus (even though my initial tests for the came back negative). I won't know anything for a while, because the blood work is just the first step to diagnosis. After the blood work comes consultations with rheumatologists, and possibly dermatologists, then maybe they will come to a general consensus.

 

Anyways, I was wondering if anyone else here deals with Lupus or any other autoimmune disorders? I know that Lupus is very treatable, and I am otherwise incredibly healthy, so I am not "fearful," just apprehensive. Being diagnosed with a chronic disease that will effect me for the rest of my life at the ripe old age of 32 is not too appealing to me. I guess I will just deal with it as I need to.

[Ya_Big_Tree]

I had something like that last year, it took 4 months to go away completely. I was also tested for Lupus but they came to conclusion it was an idiopathic purpura rash. It wasn't itchy or anything and was basically my blood vessels breaking when put under any type of pressure. It showed up as a bunch of red dots on my skin. Not itchy, just really ugly and annoying. My doctor referred me to a dermatologist who referred me to a hematologist and they told me to increase my Vitamin C to 500mgs twice a day... which was weird cause I eat a ton of citrus fruits. It still took 4 months to go away.

 

It was the weirdest thing. I caught the flu and was sick for like a week then I was getting better and I went to bed and woke up with all these red dots all over my arms and legs and some areas on my stomach. Then it would go away and come back... it was really strange.

 

My tests for Lupus came back negative too... it was just a freak autoimmune reaction to something that they never discovered what it was.

 

I hope that it's nothing serious for you.

 

 

[Rushchick10]

Well, I am presenting with the classic "butterfly" rash on my cheeks that is a symptom of Lupus. I am hoping that, if it is Lupus, then it is the skin variety and no the systemic one. I have no other rashes or skin irritations anywhere on my body. My initial test for the antibodies associated with Lupus came back negative, but my doctor did some research and said that a good percentage of people who are ultimately diagnosed with the disease also have a negative result on that initial test. So, they took, like, half a pint of blood from me (not much of an exaggeration!) and more tests are to be run.

[1 of the 7]

I have type 1 diabetes, which usually presents in children, but thankfully waited until I was 25. Many of my family members also developed autoimmune disorders, and they all point to our having genetic damage to a certain chromosome.

 

I sure hope you find you have something other than lupus, but if you do, I hope you respond well to treatment. And know you're not alone in dealing with illness - you know where to find me if you need to chat!

[Babycat]

QUOTE (Rushchick10 @ Oct 12 2010, 06:49 PM)

So, after 9 months of messing around with this weird skin rash I develop on and off, the doctor is thinking that I have Lupus (even though my initial tests for the came back negative). I won't know anything for a while, because the blood work is just the first step to diagnosis. After the blood work comes consultations with rheumatologists, and possibly dermatologists, then maybe they will come to a general consensus. Anyways, I was wondering if anyone else here deals with Lupus or any other autoimmune disorders? I know that Lupus is very treatable, and I am otherwise incredibly healthy, so I am not "fearful," just apprehensive. Being diagnosed with a chronic disease that will effect me for the rest of my life at the ripe old age of 32 is not too appealing to me. I guess I will just deal with it as I need to.

Lupus sounds like a very awful thing to have to deal with, Rushchick10. One thing I ever seem to suffer with, on & off, is the typical skin rash, with raised bumps & the most horrendous & aggravating itching, & God, does that itching drive you mad... It's only ever on my upper legs, & it flares up whether it's hot or cold. The only medication that seems to help is any aqueous cream or calamine lotion. Also, about 10 years ago, I developed an allergic reaction to the adhesive in certain types of plasters when I had my first ever tattoo done - I touched the rash, scratched it, & the next thing I knew, both my arms were covered with these rashes, & even though I'd only briefly touched my face, my while face had swelled up & I could barely see. I had to take myself to a hospital & hang about for nearly 5 hours before anyone could be bothered to see to me. Didn't stop me from having any more tattoos though, as by then, I'd wised up. I truly hope you get better soon.

[Ya_Big_Tree]

QUOTE (Rushchick10 @ Oct 12 2010, 07:24 PM)

Well, I am presenting with the classic "butterfly" rash on my cheeks that is a symptom of Lupus. I am hoping that, if it is Lupus, then it is the skin variety and no the systemic one. I have no other rashes or skin irritations anywhere on my body. My initial test for the antibodies associated with Lupus came back negative, but my doctor did some research and said that a good percentage of people who are ultimately diagnosed with the disease also have a negative result on that initial test. So, they took, like, half a pint of blood from me (not much of an exaggeration!) and more tests are to be run.

Really? I may have to get tested for that again then, I didn't like the tests that's for sure... it's still really weird when autoimmune things happen and the doctors can't determine the cause. This is like 4 different doctors too in my case... all 4 of them said they don't know what caused it. Other than it being my immune system being a "Superhero" and working over-time. It's usually something that children get aparently...

 

I hope your rash goes away... I could even be an allergy to something as common as latex. Aparently the symptoms for an allergic reaction to latex are similar as to that of Lupus. Might wanna get an allergy test too.

 

[Rushchick10]

QUOTE (Ya_Big_Tree @ Oct 13 2010, 05:46 AM)

QUOTE (Rushchick10 @ Oct 12 2010, 07:24 PM) Well, I am presenting with the classic "butterfly" rash on my cheeks that is a symptom of Lupus.  I am hoping that, if it is Lupus, then it is the skin variety and no the systemic one.  I have no other rashes or skin irritations anywhere on my body.  My initial test for the antibodies associated with Lupus came back negative, but my doctor did some research and said that a good percentage of people who are ultimately diagnosed with the disease also have a negative result on that initial test.  So, they took, like, half a pint of blood from me (not much of an exaggeration!) and more tests are to be run. Really? I may have to get tested for that again then, I didn't like the tests that's for sure... it's still really weird when autoimmune things happen and the doctors can't determine the cause. This is like 4 different doctors too in my case... all 4 of them said they don't know what caused it. Other than it being my immune system being a "Superhero" and working over-time. It's usually something that children get aparently...   I hope your rash goes away... I could even be an allergy to something as common as latex. Aparently the symptoms for an allergic reaction to latex are similar as to that of Lupus. Might wanna get an allergy test too. I'll probably end up going to an allergist if these tests come back negative again. It's just my luck. I am pretty healthy, and rarely end up at the doctor for more than my annual "female" exam. But, it seems that, when something goes wrong with me, it is uber weird.   When I had my son (premature, and he was transported to a bigger hospital shortly after birth while I stayed in the small-town hospital and didn't see him for a week! ), I got really sick in the two days after the c-section, having a high-spiking fever that nearly killed me. Doctors never really figured out what was causing it (they tested everything, performed an ultrasound to make sure nothing was "left" in me after the surgery, etc. ), and finally decided that I must have a blood clot "somewhere," and put me on blood thinners for a week.   I had an unexplained rash in my right armpit about two years ago, but it was minor and over the counter creams helped with the symptoms until it finally disappeared. Looking back over all the strange ailments that have affected me over the years, those symptoms (high fevers, skin rashes, and now, face rash, greater-than-usual hair loss that accompanies my face rash, mild joint pain, cold extremities) don't point to anything specific on their own, but when put together, doctor says I probably have an autoimmune disorder.   I have always been pretty healthy otherwise, rarely getting sick when others around me are suffering with colds and flus. No other medical issues. Luckily, since I am so healthy otherwise, the doctor says that, if it is Lupus, then it will be very very manageable. I just have to have more frequent screenings for things like heart problems, kidney problems, etc, as those sometimes affect people with Lupus.

[-Jane-]

I don't have Lupus, but my mother did. She had been diagnosed with rheumatoid arthritis years before. She went in to surgery for a knee replacement, and over the course of that surgery and dealing with subsequent knee rejections doctors discovered that she had systemic Lupus. Suddenly a lot of my mothers illnesses began to make sense. My mother was person with a ton of energy, but sometime inexplicably she would just collapse from exhaustion.

 

My mother had an extreme form of Lupus that arguably was caused by the environment that she worked in. (We are still in court) Her Kidneys would literally dump toxic waste into her system, and that waste would seek a way out usually through her hands and feet. Her joints hurt all the time and eventually she could not lift more then 10 pounds without a lot of stress on her knees. But even in this extreme form she lived with it for a long time, with very good quality of life.

 

Eventually she was diagnosed with terminal lung cancer, completely unrelated to the Lupus. She was a lifelong smoker. But at that time she submitted herself to radical experimental testing for new treatments for Lupus, and I like to think that they were able to learn a lot from her. I think she just thought it was a way to give back.

 

Sorry about the long post I guess the point I am trying to make is that even with a very extreme form of Lupus its no death sentence, My doctor has Lupus and I think she just thinks of it as a good excuse to wear cool hats.

[garbo]

QUOTE (Rushchick10 @ Oct 12 2010, 06:49 PM)

So, after 9 months of messing around with this weird skin rash I develop on and off, the doctor is thinking that I have Lupus (even though my initial tests for the came back negative).  I won't know anything for a while, because the blood work is just the first step to diagnosis.  After the blood work comes consultations with rheumatologists, and possibly dermatologists, then maybe they will come to a general consensus.  Anyways, I was wondering if anyone else here deals with Lupus or any other autoimmune disorders?  I know that Lupus is very treatable, and I am otherwise incredibly healthy, so I am not "fearful," just apprehensive.  Being diagnosed with a chronic disease that will effect me for the rest of my life at the ripe old age of 32 is not too appealing to me.  I guess I will just deal with it as I need to.

I don't have lupus, but I do have epilepsy (a chronic illness). Not fun and something I'm not very keen to talk about, but I do understand what it's like living with a life long chronic illness.

 

However, try getting a second opinion. And also check out homeopathic doctors or at least more natural doctors. If you do have lupus, which I'm so sorry about, you don't want a doctor loading your system with unnecessary drugs that may poison your body.

 

Anyhow, that maybe doesn't make much sense, but I do wish you the best of luck and hope you get the answer you're looking for (and hopefully it's not lupus). I wouldn't wish any chronic illness on anyone.

Edited October 19, 2010 by garbo

[Rushchick10]

Ok, one more set of (very expensive) lab tests say, once more, that I do NOT have Lupus.

 

I guess I just want to know what the HELL is going on with me. I guess I gotta just go to a dermatologist, which is all I wanted in the first place.

Edited October 20, 2010 by Rushchick10

[Ya_Big_Tree]

QUOTE (Rushchick10 @ Oct 19 2010, 09:29 PM)

Ok, one more set of (very expensive) lab tests say, once more, that I do NOT have Lupus. I guess I just want to know what the HELL is going on with me.  I guess I gotta just go to a dermatologist, which is all I wanted in the first place.

Good luck.

 

Edited October 20, 2010 by Ya_Big_Tree

[yaoi_myantidrug]

QUOTE (Rushchick10 @ Oct 19 2010, 08:29 PM)

Ok, one more set of (very expensive) lab tests say, once more, that I do NOT have Lupus. I guess I just want to know what the HELL is going on with me. I guess I gotta just go to a dermatologist, which is all I wanted in the first place.

Good luck. I hope it's nothing serious.

 

But whatever it is, stick with actual doctors.

[edie]

QUOTE (Babycat @ Oct 13 2010, 08:27 AM)

QUOTE (Rushchick10 @ Oct 12 2010, 06:49 PM) So, after 9 months of messing around with this weird skin rash I develop on and off, the doctor is thinking that I have Lupus (even though my initial tests for the came back negative).  I won't know anything for a while, because the blood work is just the first step to diagnosis.  After the blood work comes consultations with rheumatologists, and possibly dermatologists, then maybe they will come to a general consensus.  Anyways, I was wondering if anyone else here deals with Lupus or any other autoimmune disorders?  I know that Lupus is very treatable, and I am otherwise incredibly healthy, so I am not "fearful," just apprehensive.  Being diagnosed with a chronic disease that will effect me for the rest of my life at the ripe old age of 32 is not too appealing to me.  I guess I will just deal with it as I need to. Lupus sounds like a very awful thing to have to deal with, Rushchick10. One thing I ever seem to suffer with, on & off, is the typical skin rash, with raised bumps & the most horrendous & aggravating itching, & God, does that itching drive you mad... It's only ever on my upper legs, & it flares up whether it's hot or cold. The only medication that seems to help is any aqueous cream or calamine lotion. Also, about 10 years ago, I developed an allergic reaction to the adhesive in certain types of plasters when I had my first ever tattoo done - I touched the rash, scratched it, & the next thing I knew, both my arms were covered with these rashes, & even though I'd only briefly touched my face, my while face had swelled up & I could barely see. I had to take myself to a hospital & hang about for nearly 5 hours before anyone could be bothered to see to me. Didn't stop me from having any more tattoos though, as by then, I'd wised up. I truly hope you get better soon. You may be allergic to latex. Might be worth finding out in case you ever need hospital treatment.

[Rushchick10]

[Babycat]

[Rushchick10]

[Skin Bag]

Sorry to hear you're having these health problems Rushchick. But you have a real positive attitude about it and that will get you through it (as it does all of life's troubles). Hope you find the cause and get better soon.

 

[Rushchick10]

QUOTE (Skin Bag @ Oct 24 2010, 01:40 AM)

Sorry to hear you're having these health problems Rushchick. But you have a real positive attitude about it and that will get you through it (as it does all of life's troubles). Hope you find the cause and get better soon.

Well, as someone who rarely gets sick, I know how a positive attitude towards one's health can only be a good thing. This thing going on...yeah, it's painful, but it really falls in the category of "major annoyance" more than anything. It comes and goes without any warning or any reason. Just tell me what to do to avoid this! That's all I ask!!

[garbo]

Ugh, sorry about the continuing health issues! Have the doctors found nothing yet?

[FoxxiStarr]

FFS woman! I go away for 2 weeks and you start to fall apart!! Seriously, glad its not lupus ... you deserve giant Ged type hugs

[Rushchick10]

QUOTE (FoxxiStarr @ Oct 24 2010, 03:28 PM)

FFS woman! I go away for 2 weeks and you start to fall apart!! Seriously, glad its not lupus ... you deserve giant Ged type hugs

Much appreciated...although (no offense! ) I'd much rather get a Ged-type hug from the man himself! You're a good friend, Foxxi!

 

Yeah, still no idea. The rash has subsided, and if it flares up again my doctor is sending me straight to a dermatologist (um, I asked for that MONTHS ago!! ) to try and figure it out. In the mean time, here's hoping that it stays away for a bit.

[FoxxiStarr]

QUOTE (Rushchick10 @ Oct 24 2010, 08:31 PM)

QUOTE (FoxxiStarr @ Oct 24 2010, 03:28 PM) FFS woman! I go away for 2 weeks and you start to fall apart!!   Seriously, glad its not lupus ... you deserve giant Ged type hugs  Much appreciated...although (no offense! ) I'd much rather get a Ged-type hug from the man himself! You're a good friend, Foxxi!   aww thanks. Fingers crossed that it stays away! Catch up this week sometime??

[Rushchick10]

[Babycat]

[RushCanuck]

On last night's CoasttoCoastAM, the hour 3 guest stated that members of a Lupus support group eliminated food and drink with Aspartame and their Lupus went into remission. I have also heard of MS going into remission by eliminating Aspartame. I am strictly passing this along and leave it for the individual to decide whether they subscribe to theories such as this.