Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Good morning! I'm popping in from the MS group. I'm in limboland like I'm sure many of you are too. I've been "tested for lupus" and other autoimmune diseases twice over the last two years.
The first round of tests were negative with a slightly elevated rheumatoid factor. The second round of tests came back mostly negative with a slightly elevated ANA 1:160 speckled pattern. All of the followup tests were negative. I have visited a rheumatologist and he says he "doesn't feel comfortable diagnosing me with a connective tissue disorder at this time." That was last September.
Long story kinda short....I had a major neurological incident later in September. They said I likely have MS. I recovered well and all of my followup test at 3 months show that I am doing well, have no brain lesions and no new activity.
I know that Lupus can affect the Central Nervous System. I have other symptoms that fit with Lupus and not MS. Joint pain, a sun sensitive rash on both arms, dry eyes, mouth ulcers....etc. (I've also been tested for Sjogrens.)
And now this. Take a look at this pic. My face has been burning for the last couple of days. I always look a bit flushed but this is a rashed red rash on my nose and cheeks. It is dry, red, raised and, like I said, quite "burny." In your expert opinions, does this looks like a malar rash? Help. Trying to decide if this warrants another visit to the rheumie or another round of tests. It has been 4 months since my last antibody tests. Thanks!
http://s1159.beta.photobucket.com/user/Jessica_Stites/media/245_zps81607300.jpg.html
The first round of tests were negative with a slightly elevated rheumatoid factor. The second round of tests came back mostly negative with a slightly elevated ANA 1:160 speckled pattern. All of the followup tests were negative. I have visited a rheumatologist and he says he "doesn't feel comfortable diagnosing me with a connective tissue disorder at this time." That was last September.
Long story kinda short....I had a major neurological incident later in September. They said I likely have MS. I recovered well and all of my followup test at 3 months show that I am doing well, have no brain lesions and no new activity.
I know that Lupus can affect the Central Nervous System. I have other symptoms that fit with Lupus and not MS. Joint pain, a sun sensitive rash on both arms, dry eyes, mouth ulcers....etc. (I've also been tested for Sjogrens.)
And now this. Take a look at this pic. My face has been burning for the last couple of days. I always look a bit flushed but this is a rashed red rash on my nose and cheeks. It is dry, red, raised and, like I said, quite "burny." In your expert opinions, does this looks like a malar rash? Help. Trying to decide if this warrants another visit to the rheumie or another round of tests. It has been 4 months since my last antibody tests. Thanks!
http://s1159.beta.photobucket.com/user/Jessica_Stites/media/245_zps81607300.jpg.html
I'm not an expert by any means, but it's hard to tell the malar rash from other skin problems by appearance alone. My best advice to you is to get an appointment with a dermatologist as soon as he can get you in...because the rash could disappear as quickly as it came on. He can do a biopsy to check if it is a lupus rash. Then depending on results it could warrant getting back in to the rheumy's office.
He did MRI etc which showed lesions on my brain, then I got the first bout of optic neuritis and he prescribed me Prednisone. I was on 20 50mg pulses daily for 7 days. Worst time in my life. Had to go to the hospital cause my heart was racing and my blood pressure was so high.
The hospital staff couldn't believe that he prescribed me that much medication and said that normally they admit you and do it thru I.V.! I did not know that at this time.
That should of raised red flags about my doctor to me. He says he thinks I don't have M.S. (which is fantastic).
I don't see him anymore, I still have neurological issues but I gave up on trying to find out what's wrong with me.
If things get bad then I will go down that road again, this time with more knowledge and experience to find a good doctor.
I should get tested for Lupus tho, my son has SLE along with a cousin and my mother has Discoid Lupus.
I hope you find out what is going on with you, wishing you the best of luck through this tough journey!
It does sound like lupus. I'd say keep at it with the docs, it can take a really long time to get a diagnosis. I still don't have a diagnosis, despite having a long list of symptoms that fits lupus to a tee. My trouble is that I'm out of money.
Ask the dermatologist if they are willing to deal with lupus. Mine is not, she says that only rheumatologists deal with lupus. That's not true of course, but maybe it's better to check out the dermatologist before you get involved with him/her.