Hi everyone(: Its been a while (: Hope u all r doing well (: Can someone help me understand these results better. I missed my appointment the other day so decided to go by and pick the results up myself to see. All my other tests r positive an this was the final one they wanted just to confirm everything. Its taken me almost two years with charity hospitals and clinics to get this little bit done that shouldn't have taken but a couple weeks. I waited on the list over a year before even getting the first visit. Ok so im gonna write word for word as they put it.
THE FIRST PAGE:
tHIS PAGE JUST STARTS WITH MY NAME AND HOSPITAL # AND DATES ALSO THE PHYSICIANS NAME. THEN TOWARD THE BOTTOM
CLINICAL DIAGNOSES:
SLE
SPECIMEN:
LEFT ARM SKIN
SECOND PAGE:
GROSS DESCRIPTION:
RECEIVED IN FORMALIN IS A 1mm PUNCH BIOPSY OF PIGMENTED SKIN. ENTIRELY SUBMITTED.
FINAL DIAGNOSIS
GROSS & MICROSCOPIC:
Skin, left arm, punch biopsy:
-interface dermatitis with increased interstitial mucin.
-see comment
COMMENT:
- In the differential is systemic lupus erythematosus and others.
- In the appropriate clinical context, the histologic findings are compatible with systemic lupus erythematosus. The histologic differential diagnosis includes DERMATOMYOSITIS and other connective tissue disease.
What exactly does all this mean? Im a bit confused ! I looked up Dermatomyositis and it is a rare muscle disease that im understanding can be caused by lupus or tumors in the intestinal tract. It says its a progressive disease that is fatal! Someone please help ):
The main point is that dermatomyositis is mentioned as a possibility, not a certainty, and other connective tissue diseases are mentioned as a possibility, too. Systemic lupus is what is viewed as most probable.
Even if you had dermatomyositis, here is what Wikipedia says: "Before the advent of modern treatments such as prednisone, intravenous immunoglobulin, plasmapheresis, chemotherapies, and other drugs, the prognosis was poor.[3] Now there are numerous treatments and immunomodulatory drugs. Fortunately, over 90% of patients today will do well for many years, with remission being a possibility. However, it is still important that treatment begin as soon as possible." So, sites saying it is terminal may be older sites.
Pathology reports aren't really written for patients. I feel like pathologists will throw all sort of horrible diagnoses in there just because to make things more interesting. My son's pathology report included some sort of horrible cancer in differential diagnosis.
Bottom line, you have SLE and the biopsy indicates that they should look further into the possibility of dermatomyositis. It doesn't mean you have it, it just says it's something they should look into more... along with other connective tissue diseases. It's NOT a definitive diagnosis for dermatomyositis so try not to freak out.
(: Thank yall all so much! I am so very grateful now i understand what they r meaning by differential, lol! I have never heard of dermatomyositis before this. now that i have read several sites on it ,it makes me wonder. every single symptom that is described is familiar to me. but they r also so similar to SLE symptoms as well. guess i have more tests ahead of me. I thought this would finally be the last one at least for a while And now i know i can start treatment now that this final test has confirmed the SLE. Thank ya'll again for y'alls immediate responses. I can calm my nerves a little bit now (:
It says you have systemic lupus erythematosis and also another autoimmune disease of the muscles called dermatomyositis. It’s a disease that likes to “ride along” with lupus as my doctor says. I have both also and my doctor has never said anything to me about it being fatal. It just means very sore and tender muscles. I take gabapentin for it.
Hi jujube (: I had to wait so long because I am on Medicaid. Also here were I live we have a severe shortage of rheumatologists that except Medicaid. So the waiting lists r a year and better. And now even with the dr knowing these results I still have to wait until june 27 to go back. And the biopsy was done almost 8 weeks ago now. She wanted to see me back in two weeks but the hospital clinic scheduled me that far. Ive told them she said two weeks. she gave me a prescription of a very few steroids. when she handed them to me she said here this is just a temp treatment just enough for you to make it thru until I see u back in two weeks. They don't care around here. So many things could go wrong in the mean time and they could care less. I mean i'm barely a functioning person. I don't have any kind of help at all. No support no nothing. I feel so helpless and alone all the time. My mom lives next door and she don't even at least call to see if I need things from the store for me and my 5 year old daughter r nothing. I've got to get to were I have a tiny bit of quality of life. Thank u for taking the time to reply (: ...............
Ps ,
thank u for your reply also! I would like to talk to you some more about the dermatomyositis! What is the other name for the medicine ur taking for it?
Hello, that really sound scarey! I don’t know nothing about any of that , make an appointment with the doctor , ask him/her to explain everything step by step. A nd make sure you do ask questions ! Most of all don’t Allow them to just say anything to you. Remember this is your health and your Life… Beverly L.
Sorry, cannot help or have the answers for I am new at this too. I was diagnose with Lupus a week and half ago. I am learning all I can learn about this disease.
It frightens me what other unknown tests I may have to go through. Never heard of this disease until I received my results. I am still paralyzed hearing the news of my results.
Stay focus positive, don't worry..God is still on the throne.
You definitely have SLE which is stated and also DERMATOMYOSITIS if that's how it was written in caps, as that's highly stating the fact of the biopsy.
Dermatomyositis causes muscle weastage also known as (Muscle Atrophy) which i've had since my early 20's and now at 44 is really progressing.
You need to be also tested for Polymyositis which can come with Dermatomyositis, as Polymyositis is a form of vasculitis plus the result states (other connective tissue disease) you need to also find out what the other connective tissue disease is.
(interface dermatitis with increased interstitial mucin) means " interstitial granulomatous dermatitis"
No i'm not with the Myosistis community because i moderate on here and also rthe sjogren's site besides being with the fibro site also but i do know what myositis is as my dermo tested me on the vasculitis regarding it which came back negative :)
I've just look at the site and it's not long been running like the sjogrens, do you have it dancermom? dancermom said:
Terri, do you belong to the Ben's Friends Myositis community? If not, you may want to check it out:
Well your a busy woman and it's nice of you to do it but with so many health issues i can only do so much which Scott knows but all the best with moderating on there :)
dancermom said:
I don't have myositis, but I am joining the group today to help moderate. I am also on AVM, Amyloidosis, and Ehlers-Danlos.
Monique, if it does turn out that you have dermatomyositis, the community at http://www.myositissupport.org/ is just lovely. Lots of beautiful, strong young women who would make great friends. Feel free to join the group even if you would just like more information.
Thank yall all so much for being here! If it wasn't for yall here at lifewithlupus I would be completely alone in this......... Thank u lord for bringing me here to lifewithlupus..........Yall all have given me so much good info and advise and have helped to calm my nerves down a bit (: I don't know or understand why they wouldn't just do the immunofluorescence tests to begin with beings its the better of them. And why wouldn't they list the other autoimmune disease that they r talking about. Maybe they did in another part of the records. I only asked for the test results from the biopsy, I didn't think to ask if there were more papers with it. Im gonna go run up to Lafayette next week to see. I keep calling to see if they have had any cancelations were I can get in sooner than june 27th. The las time I called the lady told me if I go thru the E.R that they could fast track me into the clinic for a sooner appointment. She told me to be there at 7am sharp on Thursday because that's the only day that derma and rheumy are in that clinic. And they r only there until 8:30 am. So they r in one day a week for an hour and a half. this is why the waiting list is so very long. Its ridiculous! So anyhow the dr came in and said there was nothing she could do for me that she was not qualified to treat me she was just an ER dr. That the meds were to strong for her to give. I said yea ok that's fine but could u at least give me another rx of steroids and help me get into the clinic sooner because things r getting so much worse and I can not function day to day. She said I can give u a shot of steroids an that's it. I broke down at that point. Its like really a shot that's gonna help a tiny bit for what a couple days. Then I said to her well why did they tell me if I came thru here u could fast track me into the clnic for a sooner appointment. She says well I cant changen their schedual but I can try to see if I can get it sooner. I told her that's all Im asking is for u to try. So she leaves out after only talking with me maybe 2 r 3 minutes. I waited and waited. Finzlly the nurse came in with a shot of steroids. We got to talking, she spent a while talking with me. I told her what I had an what was going on and that they want see me again til june 27th. She said oh no I don't think so that is way to long to have to wait with the shape u r in. she said hold on give me a minute I have a friend over there in appointments. She left out an came back a few minutes later with amn appointment letter in her hand. She got me an appointment for may 23rd. But I noticed it wasn't for rheumatology or dermatology. It was for the west clinic(medical clinic) I brought it to her attention, she said they were qualified to treat lupus and other stuff like that. But im not so sure yall! What do yall think? And do u know that the dr that seen me never checked to see if she could help me get into the proper clinic r anything. Im so disappointed in UMC hospital in Lafayette Louisiana! I feel like I cant trust them and that they would end up letting me die r something. And I don't have any other choices. I cant get regular health insurance cause im on disablilty and Medicaid. Im stuck and don't know what to do r who to turn to for help yall! Thanks for listning (: Yall r all so very awesome !!!!!!!!