View Full Version : New Spooner
01-22-2011, 02:28 PM
My name is Kelly and I am new to your site, although, unfortunately, not new to Lupus. I have had obvious symptoms for over 13 years, but got confirming diagnosis of Lupus a month ago.
A few years ago, I was diagnosed with Sjogren's Syndrome. The SJS was confirmed because I am ANA pos, SS-A pos, RNP pos with all the classic symptoms of dry mouth, dry eyes (my contacts would literally break apart in my eyes) and swelling throat glands. My previous rheumy would never confirm Lupus because I must not have fit all the criteria.
I was recommended last spring to John Hopkins (who has a SJS speciality clinic) but my insurance would not pay for it. I was recommended by them to an great local rheumy who has worked with the head of Rheumatology at JH. He diagnosed an definite overlap with Lupus, so here I am...
Part of his suspicions were my re-occurent hair loss (it comes out it bunches, not your general thinning) and re-occurent rashes on my chest (never had the mylar rash on face).
I've been on practically every med there is! Just started Plequenil thanks to my new doc. I also suffer from severe IBS and esophogeal dismotility, as well as severe joint pain( hands and hip pain). I also suffer from Raynauds and it seems that every year, that gets worse. My GI doc suspected Scleroderma because of scarring in my throat, but I am hoping he is wrong on that! I seem to have a little bit of everything, but that seems to be how these AI things are.
I am hoping to learn some new tricks on here-- share some of my own, and commiserate with like participants on this hard journey.
01-22-2011, 02:55 PM
i totally understand how you are feeling, they have tried me on every med going, i am now on chemo, i also have raynauds which we know can be very painful, and doent have to be cold outside to come on, i have problems with hair loss too, i seem to get these lesions that i cant do anything about, apparently its usual for the disease. my rashes seem to be worse on my back and can turn into lesions and ulcers which then a nurse will come and dress, and hope then not to get infection. when i was in hospital i picked up everything going including mrsa and cdif and norwok virus, thankfully i have managed to get rid of them over 6 months. i had pneumonia for three weeks over christmas, and i am now getting over that. i still have the cough but i feel alot better. i have a throat lubricant to help me swallow due to lack of saliva. i am a complex case is there words. the sjogrens syndrome is a nuisance, i find i have to use alot of ice in my drinks, which helps with the dry mouth symptoms, we have bought an ice maker to cope with the amount i need, its quite normal for this which i didnt know until recently when i said to the doc, about the ice he said that it was the norm to want the ice with the sjorgrens syndrome. the pain everywhere can be hell sometimes and does reduce me to tears. i try to be strong and distract myself but that is not always possible as you would probably know yourself. ny kidneys and lungs have been affected by the lupus which came as a shock, but i try not to think about it too much. it is hard to get the correct diagnosis. it must of been awful for you to have been ill for that long and not know what was going on, i had my symptoms for about 4 years before i got the correct diagnosis, even one doctor put it down to depression, but you are bound to be depressed feeling like we have been, anyway bye for now look after yourself and hope to hear from yous soon astrid40
Hello and welcome to WHL! We are so glad that you both found us. I am sorry both of you had to go through the roller coaster of doctors/diagnosis to figure out what you have but I am glad that someone finally listened! Too many of us stay on that roller coaster for far too long. Please make yourselves at home. Browse through the old threads or start new ones if you wish. From this day forward you are not alone in this. You are now part of our WHL family!
01-22-2011, 05:09 PM
Thanks tgal and astrid. Yes-- it has been a tough journey. My biggest relief had been the SJS diagnosis because up until then, I had just been labeled a hypochondriac, lazy, and even fanatical by my doctors. Even my friends and family couldn't understand why I never seemed to have energy. I just felt sick all the time! I had a strong hunch that Lupus was also a culprit, but I'm not sure that it opens up any more doors. I think a new rheumy with the Plequenil at least may be a fresh start.
Astrid-- I am very suseptible to pneumonia and bronchitis too. I just went through a bout with inflammation around my lungs. Prenisone, though, has never worked for me. Thankfully, I haven't had the open wounds like you have. Other than my lungs and my stomach, my organs seem to be OK. My kidneys were a bit overworked because of the doses of anti-inflammatories that I was on, but my doc had to take me off of those because my stomach was torn up and my blood pressure was out of control, even with medication. So I'm cold turkey now except for Tramadol at night and OTC stuff during the day.
Well, anyhow, I look forward to chatting with all of you.
01-22-2011, 05:21 PM
Welcome to WHL! I recognize you from the SJS site, where I often lurk for information.
Whenever I've read your posts, I thought that we have a lot of similarities.
My dx is Mixed Connective Tissue Disease, with overlaps from Lupus, Sjogren's, RA and Psoriatic Arthritis, with Spasmodic Dysphonia and Meniere's
thrown in for even more fun. Many of my symptoms seem to match up with SJS. I attended a Sjogren's conference and met lots of people just like me!
Unlike you, I do get the Malar rash on my face. It was really obvious before I started taking Plaquenil and MTX. Now it just shines forth when I'm stressed.
You will find that there are many of us here at WHL who have some sort of mixture of AI diseases, so it's not just a board for Lupies. We are one big, supportive
family here, and you will get lots of good advice and lots of support when you need to vent.
I hope that you keep coming back to join in our conversations. I think that I recall that you are a former teacher, like me. Am I right?
01-22-2011, 08:34 PM
I wondered if there would be a few Sjoggies from the other site on here. I debated about joining another forum, as there are many people on the Sjogren's forum with Lupus. However, it would seem that the same holds true here, so maybe I double my information.
I am still a teacher. I went back to work full time in January, which might be a mistake. I come home and fall in bed by 7:00 at night. I took a position that had been filled by multiple long term subs so they needed somebody fast. Unfortunately, that means I was thrown in with no training, no computer access for two weeks (although everything our system does-- attendance, e-mail, announcements, grades is on the computer), and I was given a club to sponsor that our activities director really doesn't want. You know how it is!! There are quite a few teachers with AI diseases-- makes me often wonder if it's the chicken or the egg. I know that I will really have to practice stress management and learn how to say "No."
I'm pretty sure that I remember chatting with you on the other forum. You'll have to PM me your user name on there so I recognize you.
01-23-2011, 10:13 PM
Boy, do I know how it is! I had to learn computers really fast when I was hired at a high-tech school.
I loved my job - I was able to design the Latin program for a brand new high school. I taught Latin I through Latin IV AP for 7 years.
My students were great - but the extra duties, requirements and paperwork that the administration kept adding on every year got to be too much for my health.
The school was getting rougher - some gang members got the school policeman down in the hall and kicked his head in, (The hallway that I had duty in!!)
The last year that I taught, I had knee surgery, so I wheeled around the halls using a rollator, and sat on it to teach.
When my hubby got the opportunity to go to California to study for a PHD, we jumped at it. I helped the school to find a new Latin teacher, we found renters
for our house, and we escaped to the west coast.
I'm loving retirement - I have a view of the Monterey Bay from my couch!
(Check your PMs)
01-24-2011, 09:06 AM
Welcome to the WHL and there's so many threads to help you.
I have Sjogren's like yourself and marla but never joined that site, even though marla gave me the link just looked at the time, the symptoms can be a right nightmare and like yourself suffer alot of pain and alot in the hip area on my left side but the last 2 days i've had a wonderful pounding headache that won't move.
I have lupus, raynauds, skin problems the lot like yourself and i really understand where your coming from but they've told me i was born with it but now at 42 it's doing it's lovely creeping up routine alot to quick and fast for me to cope with at the mo.
It will be lovely getting to know you Terri. xxx