Just read your message. I was diagnosed with SLE lupus about 13 yrs. ago. At the end of 2013, I suffered from a Major flare from Thanksgiving through the holidays, and up until today. I have't had this happen since I began treatment, which included prednisone ( I had a Major bad reaction to this drug, so my doctors switched me to Aziothyaprine, which treats my thrombocytopenia, anemia, and low white blood cell counts). I was also on Plaquinil. However, I desperately need something to get rid of the servers pain that I am currently in. My lupus greatly resembles Multiple Sclerosis, and Rheumatoid Arthritis. I have all of the nervous symptoms: CNS : brain $ spinal cord; PNS : the peripheral nerves, and ANS : the automatic nervous system, which affects my heart & lungs. Right now, I'm not experiencing the plurisy, or the heart problems, but am having the nervous system symptoms & the Rheumatoid Arthritis symptoms. I see me Rheumatologist this Friday. I am considered permanently disabled, and I haven't worked since the time I was diagnosed. I also have bipolar disorder. My " flare" has been caused by SEVERE stress, that I have been experiencing since March of 2013, until now. This included my pharmacy mixing up all of my meds, my first psychiatrist losing his license, and my new one, being "questioned" by me as to whether or not he was really an MD, even though it clearly says so on all of his prescriptions; MAJOR computer, mice, monitory & speaker problems ( I am a writer & an artist, and so my computer is absolutely vital for me; I went without one for about 2 months, & finally had to buy a new " tower" yesterday). And finally, a female crack addict set my apartment building on fire.
I wrote down all of this stuff in detail for both my Rheumatologist, my Hematologist, & my psychiatrist. I hope my doctors can give me something for the severe pain I am now experiencing!View Thread
Thank you sooo much for your reply! I feel better already, getting support from another lupus sufferer and a fellow artist!
I just posted a new reply on the first discussion page (the most recent one), about my now having a diagnosis of kidney failure. I am "biracial" with an DNA report confirming that I am 62% African-American and 38% European. The diagnostic company that I used for this diagnosis is DIAGNOSEMECOM They are able to give an accurate report of your illnesses based on very accurate descriptions of your symptoms based on genetic racial makeup.
I have 5 different types of anemia, all of them very rare and are genetically inherited blood disorders. One of them is Pernicious Anemia, a rare blood disorder that is more common in people of Scandinavian descent (my grandmother had natural blond hair, but was an African-American woman who could "pass" as white during the Segregation Era in the US. I have another anemia that is more common in the Orient. How I got that one is beyond me, because there is no Native American or Oriental ancestry in my DNA genetic makeup.
At the time of this writing, I am extremely nauseous, and I vomited a lot about an hour ago. I have extreme edema in my abdomen, legs, and feet. These symptoms started around the same time that my other lupus "flare" symptoms started in 2013, but I didn't really notice them that much at the time. Now, however, the kidney failure is too obvious, and can't be ignored any longer.
But, I am confident that I will survive all of this! Again, thank you so much for your concern!
I posted a discussion a couple of months ago, about my having had SLE Lupus for over 13 years. My lupus symptoms greatly resemble multiple sclerosis, as all of my body's nervous systems are affected (CNS, PNS, and ANS). I also have several very severe anemias ( 5 different kinds, and all of them are rare-genetically inherited blood disorders, I also have thrombocytopenia, and low white blood cell counts.
I have now been diagnosed with kidney failure through an online diagnostic company DIAGNOSEMECOM. The report is extremely accurate, and I have all of the symptoms of kidney failure now. I have been having a really severe lupus flare that has lasted from Thanksgiving of 2013 up until now (I just vomited a lot about an hour ago, a new symptom that I have only been having since this lupus flare. This report is so accurate, that I am going to give copies to all of my doctors, ASAP. I currently don't have an endocrinologist, but my other doctors are very good, so I know I'll find one soon enough.
I am "biracial": African-American/European, confirmed by DNA testing: 62% African and 38% European. The doctors at the company are able to diagnose symptoms based upon your genetic racial makeup.
I have an anemia that is particularly common in people of Scandinavian descent ( my grandmother had naturally blond hair, but she was an African American, who could "pass" for white during the Segregation era. I have another anemia that is also rare, and is more common in the Orient, rather than in people who are from the United States and Europe.
Now, I'm dealing with the kidney disease symptoms. But I'm confident that I will be OK anyway. I'm a pretty strong woman, and I'm not gonna let this latest diagnosis keep me from living my life the way I want to. I hope my experience helps those of you who are new with the diagnosis of lupus get a more positive perspective on the disease. It is hard, and living with SLE Lupus is a LIVING HELL!!! But there are ways to cope with it, if you find an inner strength.
I'm sorry I don't know everybody here at this discussion, but I've only found out about this website only about three weeks ago. If any of you have seen my post, it was the one about how my lupus resembles multiple sclerosis, because I have ALL of the symptoms : CNS Lupus; PNS Lupus and ANS Lupus. My aunt had multiple sclerosis and she died when she was 45 (I'm 48). I'm told that mostly Caucasian people are the ones who mostly get this disease. I am African American, but I have a LOT of European ancestry (1/3). So I'm wondering if the genetic component of this disease could have trickled down for the period of about 400 yrs? ** ( I did a DNA test years ago, and in fact I did another one a couple of weeks ago (I haven't gotten the results back yet). Also, for the last person that just posted., I thought my type of lupus was extremely severe, but your case is totally heartbreaking. Bless you.
When you apply for SS Disability, you have to get all of your doctors to give you copies of all your medical reports, plus a detailed medical report that says you are permanently disabled, and are no longer able to work ( this includes part-time work).
After you do this, The SSDI Administration will deny your claim, and you have to appeal. The second time, after you appeal your claim, you will get denied again. At this point, you get a lawyer who specializes in SSDI claims. Once this is done, and you get "approved", you have to go to a hearing and meet with a judge to get final approval.
This process applies to all SSDI applicants, except in rare cases. I did go through the denial process twice, got a lawyer, but by the time my case and medical reports were submitted to the judge, he automatically approved my claim, saying that it was obvious that I was disabled, and that the SSDI Administration totally ignored all of my symptoms, and the detailed medical reports from all of my doctors (this included photos of the vasculitis,on my fingertips); Therefore, I did not have to go to a hearing.
Unfortunately, this entire process will take about two years. Before I even applied for SSDI, I started working part-time, and then was totally unable to work at all. So I had no income at all the entire time that I was waiting for my claim to be approved ( so I had no medical insurance at all). I was then forced to marry a man who was a friend of mine, but whom I did not love, just to be able to use his health insurance. (all of this was very stressful for me too, as I was forced to live 10 years in his house ( along with his new wife after we got divorced, and his mother who had Alzheimer's disease. At the same time, his new wife was pregnant!
Finally, two years ago, I was able to move into my own apartment that caters to disabled & elderly people ( as well as "normal" people who work; it is not a Section 8 apartment). It is a beautiful high-rise apartment here in Washington, D.C., and my mother pays my rent for me; after she dies, my brother will pay my rent.
So, to avoid the situation that I went through, try to stay as long as possible at your job (at least part-time), until your SSDI benefits are approved!
I was diagnosed with SLE Lupus about 10 yrs.ago ( along with endometriosis & bipolar disorder). My symptoms of this illness seemed to mimic those of multiple sclerosis, rather than the classic symptoms often described. I had SEVERE peripheral neuropathy pain (nerve damage), in my arms, hands, legs, feet, and even one side of my face. I lost total vision in my right eye for about 20 minutes; then, I developed severe pain in my chest when breathing, uneven heart rhythm, pain in my left side , a pulmonary embolism, vasculitis on my fingertips, and finally, thrombocytopenia, leukopenia, & anemia ( of which I am still being treated for with azothiaprine, an immunosuppressant drug (I had MAJOR problems with prednisone, as it made my bipolar depression worse, and I ended up in the psych ward). I have been in the hospital numerous times in the course of about 2 years for blood transfusions, and for when my white blood cell count & platelet counts were dangerously low. Curiously, I have never really experienced many skin rashes, and no hair loss (I have waist-length hair).
I have been on S.S. Disability since about 2003. I used to be a bodybuilder & martial artist before this disease robbed me of most of my strength to even do mild cardio workouts . This year has been an EXTREMELY stressful year for me (without going into too many details: my former psychiatrist lost his license; my pharmacy kept messing up all my medications, with both my new psychiatrist & my hematologist, and my apartment building caught on fire last week).
I have had the first lupus flare that I have had in about five years: the same peripheral neuropathy symptoms came back in my feet, and I have had MAJOR fatigue & gastrointestinal difficulties, including nausea, diarrhea, & even high blood pressure (which I have never had before). I have been sleeping for almost 12 hours during the day, and a few more hours at night, every day, for about 2 months. I am feeling a little better now, but it has taken me at least two months or more to recover. I know now that stress is the big trigger for me to get a lupus flare. I don't usually go out in the sun anyway, and the weather doesn't seem to be a factor for me.
I would like to know if there are other people with SLE Lupus who have experienced the same symptoms that I have described in this post, besides the joint pain and lupus rash that is so often described. As a side note, I had an aunt who had multiple sclerosis when I was a child. She died around age 45 ( I am 48 yrs. old). There is no one else in my family with an autoimmune disease.
Actually, I did experience joint pain in my fingers and toes after the periphery neuropathy subsided (a little). I had actually forgotten that I had joint pain in my fingers and toes because the peripheral neuropathy was so bad ( it actually is more painful than the joint pain), if you can believe that!
Thankfully, I go to my hemotologist next week, and I go to my reumatologist in February. I had actually been tested for M.S. before, years ago, before I was finally diagnosed with SLE lupus. The CT scan on my brain showed no white spots (a telltale sign of M.S.). I will tell my hemotologist about everything then.