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.
Hi Everyone ...
I'm new and I'm scared.
I'll try to make my story short ... but like many of you, it's so dang long until I think (and hope) I'm now finally getting some answers.
About 15 years ago, I developed a rash on my back and chest. Red, scaly, VERY photosensitive, kind of waxy. I had it biopsied ... and it came back as subacute cutaneous lupus. Lots of testing, a visit to a rheumatologist, no other real symptoms except for slight cervical node swelling and that wonderful thing called 'fatigue'. I had an ever-so slightly raised ANA but nothing else. I was patted on the head and sent on my way.
I pretty much enjoyed the next 10-12 years. A few episodes of tiredness (more so than usual), a case or two of pleuritis, some intermittent swelling of my lymph nodes, but it was all pretty benign.
About 3 years ago, I developed awful choking. Choking, choking, choking. A dry nagging choke/cough. I thought for sure I had a tumor in my throat. I went to an ENT physician and he immediately diagnosed silent reflux. HUH? I never even had heartburn. Duh ... that's why they call it 'silent'.
Off to a GI doctor I go. Lots of tests. My gastric empyting study showed gastroparesis. My Bravo pH test showed the worse case of reflux my GI doc had seen (DiMeester score of 94). We tried everything as far as diet changes, pills, etc. I was even having terrible reflux while on every pill I could handle (we repeated the Bravo while on meds). We finally decided that I needed to undergo a Nissen fundoplication.
Off to a surgeon I go. I have the Nissen and try to move forward with my life.
Next thing I know, I get AWFUL diarrhea. Just terrible. I'm tested for every bug to be found in my poo ... it's all fine. I undergo a colonoscopy and biopsies show lymphocytic colitis. My GI and my primary doc think it's time for me to see a rheumatologist again. During this time, I also had a barium swallow which showed esophageal motility issues.
Off I go to the rheumatologist. He looks through my chart ... not even examining me or really even making eye contact with me. I told him the only other thing that was going on was that the chest rash was getting bigger. He started to end the visit and I asked him, "Do you even want to see the rash?". He said, "Oh, ok." I lifted up my shirt, he took a look at it, and flatly said (and I quote), "I'm not impressed." He ran some bloodwork, my ANA came back negative a week or so later, and he patted me on the head and sent me on my way.
Next, my primary care doctor found a suspicious mole on my back. It was biopsied and came back as a melanoma in-situ. I needed a wide excision.
Off to the dermatologist I go. He does the wide excision, all margins are clear and he starts following me every 6 months. At the first 6 month visit, he notices the rash on my chest. I told him it was slowly but surely getting larger. "Let's biopsy that thing, shall we?", he said. It comes back as morphea. He thinks I have scleroderma. I HAD been feeling pretty crappy, muscle/joint aches and pain, hands swelling up, and the terrible choking continued.
I hated complaining though ... it made me feel whimpy and even my family doesn't really put up with it well. I'm sure you all know what I'm talking about ... people who just don't GET IT that this is not a good feeling, I feel like I'm walking through water, and no matter how much 'rest' I get, it never seems to really end. Besides that, I had, up to this point, been told I had NOTHING. My dermatologist thinks it's time to see a 'specialist' in scleroderma.
Off to the scleroderma doc I go. A 'good' one too ... very respected supposedly, practicing in a large teaching hospital with a dedicated scleroderma unit. Wow ... I'm finally going to get some answers. I wait 6 weeks to see him.
Well, he walks in, takes one look at the coffee cup in my hand (I had traveled 3 hours to see him and had a late afternoon appointment), and asked how long I had been 'addicted' to caffeine. Jesum crow, I normally drink two cups a day. Well, let's just say the visit went downhill from there.
He thought it was just morphea, nothing really. Do you have Raynaud's, he asked. Well yes, I do. I started with it a few years ago and I thought I was just getting old. Do you have telangectasias? Well yes, I do. Again, I just thought I was getting old. He runs the classic ANA test ... and it's negative. He pats me on my head and sends me away.
OK, I'm not sick. But my friends and family are sick of me at this point! I'm not kidding. So what's the disease theory of week for you now?? I felt so alone.
I go to an allergist/immunologist to see if allergies are making me choke. He sees a ton of eosinophils in my nose but I test negative to ANY allergens. He also had an under-graduate degree in rheumatology, so he thinks I need to go back to see that rheumatologist I saw a few years back. I about gagged. HIM?? I stomp my feet a few times in protest, and then I make an appointment.
I saw him three weeks ago. Again, he hardly even looked at me at the start of the visit. For the first time, I lost my cool with a doctor. He was about to pat me on the head and send me on my way.
l told him, "Listen, I'm not LOOKING to be sick, but something IS wrong. I'm only 52 years old and I have ALL these problems (gastroparesis, esophageal problems, lymphocytic colitis, Raynaud's, telangectasias on my hands, face, and arms, fingers swelling up like Mickey Mouse's paws in the morning, feeling like I'm carrying weights all over my body, blah, blah, blah.). Someone needs to act like I MATTER to them and try to figure this out for God's sake. If I don't have an autoimmune thing, then fine ... maybe I was just dealt a bad hand as far as my health, but I need some answers and someone on my side to help sort through all this with me!!!!!!"
I think I kind of scared him. LOL. I'm sure people in the hallway could even hear me losing it.
He FINALLY examined me ... took one look at my legs and his eyes got wide. I have terrible livedo reticularis. Again, two visits and he had never even looked at me really. Yes, it's on my arms and my abdomen too. My knees are purple and my elbows are bright red. OK, OK, he says ... we're going to be drawing a ton of blood. Thanks be to God.
Honestly, I fully expected to return there, be told all is fine, get the usual pat on the head, and well, you know.
BUT ... I returned last week on Friday for the 'results'. He came in, sat down with my chart and for the first time really, he LOOKED at me. I knew something was wrong. It was actually kind of funny.
Here's what he found.
1. I have a negative ANA (titer is 1:32), but a POSITIVE Anti-Smith. He said only 2-5% present in this manner, but it is 99-100% accurate for systemic lupus.
2. I also tested positive for dermatomyositis with a positive Mi-2 antibody result.
3. I have positive anticardiolipin antibodies.
4. I have protein spilling into my urine, though my kidney function tests (BUN and creatinine are normal).
5. I have a moderate elevation in IMG.
6. I am showing an iron overload (probably the least of my concerns).
Well, well, well ... I had his attention this time.
And he had mine.
He is running a few more blood tests, starting me on Plaquenil immediately, and then probably doing even more testing. He doesn't want to start prednisone yet until the testing is completed, as it can skew results. He saw me to the door and said, "Lori, we're going to be together for a while ... this is just the beginning."
OH MY GOD ... this is long. I'm so sorry, but here's what I really wanted to say to all of you that are still reading this.
I have told NO ONE. Absolutely no one. I just can't bring myself to even admit all this to myself, much less to others who have heard diagnosis after diagnosis, and then get told, "No wait, it's this" ... or ... "No wait, it's nothing."
But I think we're now officially onto something(s) and I'm scared. Really scared. I wake up at night and find myself crying. I live alone and I'm scared of so much right now, especially a loss of independence. I know I'll pick myself up, get going, and start moving along again with all this ... but this is all so new. I'm also crying because they finally found SOMETHING ... I wasn't just being discounted and devalued again.
I really feel I have no one to talk to ... no one. My dog tries ... but she just doesn't get it and usually ends up falling asleep. :)
Any thoughts ... any comments ... anyone with a similiar story?
I'm new and I'm scared.
I'll try to make my story short ... but like many of you, it's so dang long until I think (and hope) I'm now finally getting some answers.
About 15 years ago, I developed a rash on my back and chest. Red, scaly, VERY photosensitive, kind of waxy. I had it biopsied ... and it came back as subacute cutaneous lupus. Lots of testing, a visit to a rheumatologist, no other real symptoms except for slight cervical node swelling and that wonderful thing called 'fatigue'. I had an ever-so slightly raised ANA but nothing else. I was patted on the head and sent on my way.
I pretty much enjoyed the next 10-12 years. A few episodes of tiredness (more so than usual), a case or two of pleuritis, some intermittent swelling of my lymph nodes, but it was all pretty benign.
About 3 years ago, I developed awful choking. Choking, choking, choking. A dry nagging choke/cough. I thought for sure I had a tumor in my throat. I went to an ENT physician and he immediately diagnosed silent reflux. HUH? I never even had heartburn. Duh ... that's why they call it 'silent'.
Off to a GI doctor I go. Lots of tests. My gastric empyting study showed gastroparesis. My Bravo pH test showed the worse case of reflux my GI doc had seen (DiMeester score of 94). We tried everything as far as diet changes, pills, etc. I was even having terrible reflux while on every pill I could handle (we repeated the Bravo while on meds). We finally decided that I needed to undergo a Nissen fundoplication.
Off to a surgeon I go. I have the Nissen and try to move forward with my life.
Next thing I know, I get AWFUL diarrhea. Just terrible. I'm tested for every bug to be found in my poo ... it's all fine. I undergo a colonoscopy and biopsies show lymphocytic colitis. My GI and my primary doc think it's time for me to see a rheumatologist again. During this time, I also had a barium swallow which showed esophageal motility issues.
Off I go to the rheumatologist. He looks through my chart ... not even examining me or really even making eye contact with me. I told him the only other thing that was going on was that the chest rash was getting bigger. He started to end the visit and I asked him, "Do you even want to see the rash?". He said, "Oh, ok." I lifted up my shirt, he took a look at it, and flatly said (and I quote), "I'm not impressed." He ran some bloodwork, my ANA came back negative a week or so later, and he patted me on the head and sent me on my way.
Next, my primary care doctor found a suspicious mole on my back. It was biopsied and came back as a melanoma in-situ. I needed a wide excision.
Off to the dermatologist I go. He does the wide excision, all margins are clear and he starts following me every 6 months. At the first 6 month visit, he notices the rash on my chest. I told him it was slowly but surely getting larger. "Let's biopsy that thing, shall we?", he said. It comes back as morphea. He thinks I have scleroderma. I HAD been feeling pretty crappy, muscle/joint aches and pain, hands swelling up, and the terrible choking continued.
I hated complaining though ... it made me feel whimpy and even my family doesn't really put up with it well. I'm sure you all know what I'm talking about ... people who just don't GET IT that this is not a good feeling, I feel like I'm walking through water, and no matter how much 'rest' I get, it never seems to really end. Besides that, I had, up to this point, been told I had NOTHING. My dermatologist thinks it's time to see a 'specialist' in scleroderma.
Off to the scleroderma doc I go. A 'good' one too ... very respected supposedly, practicing in a large teaching hospital with a dedicated scleroderma unit. Wow ... I'm finally going to get some answers. I wait 6 weeks to see him.
Well, he walks in, takes one look at the coffee cup in my hand (I had traveled 3 hours to see him and had a late afternoon appointment), and asked how long I had been 'addicted' to caffeine. Jesum crow, I normally drink two cups a day. Well, let's just say the visit went downhill from there.
He thought it was just morphea, nothing really. Do you have Raynaud's, he asked. Well yes, I do. I started with it a few years ago and I thought I was just getting old. Do you have telangectasias? Well yes, I do. Again, I just thought I was getting old. He runs the classic ANA test ... and it's negative. He pats me on my head and sends me away.
OK, I'm not sick. But my friends and family are sick of me at this point! I'm not kidding. So what's the disease theory of week for you now?? I felt so alone.
I go to an allergist/immunologist to see if allergies are making me choke. He sees a ton of eosinophils in my nose but I test negative to ANY allergens. He also had an under-graduate degree in rheumatology, so he thinks I need to go back to see that rheumatologist I saw a few years back. I about gagged. HIM?? I stomp my feet a few times in protest, and then I make an appointment.
I saw him three weeks ago. Again, he hardly even looked at me at the start of the visit. For the first time, I lost my cool with a doctor. He was about to pat me on the head and send me on my way.
l told him, "Listen, I'm not LOOKING to be sick, but something IS wrong. I'm only 52 years old and I have ALL these problems (gastroparesis, esophageal problems, lymphocytic colitis, Raynaud's, telangectasias on my hands, face, and arms, fingers swelling up like Mickey Mouse's paws in the morning, feeling like I'm carrying weights all over my body, blah, blah, blah.). Someone needs to act like I MATTER to them and try to figure this out for God's sake. If I don't have an autoimmune thing, then fine ... maybe I was just dealt a bad hand as far as my health, but I need some answers and someone on my side to help sort through all this with me!!!!!!"
I think I kind of scared him. LOL. I'm sure people in the hallway could even hear me losing it.
He FINALLY examined me ... took one look at my legs and his eyes got wide. I have terrible livedo reticularis. Again, two visits and he had never even looked at me really. Yes, it's on my arms and my abdomen too. My knees are purple and my elbows are bright red. OK, OK, he says ... we're going to be drawing a ton of blood. Thanks be to God.
Honestly, I fully expected to return there, be told all is fine, get the usual pat on the head, and well, you know.
BUT ... I returned last week on Friday for the 'results'. He came in, sat down with my chart and for the first time really, he LOOKED at me. I knew something was wrong. It was actually kind of funny.
Here's what he found.
1. I have a negative ANA (titer is 1:32), but a POSITIVE Anti-Smith. He said only 2-5% present in this manner, but it is 99-100% accurate for systemic lupus.
2. I also tested positive for dermatomyositis with a positive Mi-2 antibody result.
3. I have positive anticardiolipin antibodies.
4. I have protein spilling into my urine, though my kidney function tests (BUN and creatinine are normal).
5. I have a moderate elevation in IMG.
6. I am showing an iron overload (probably the least of my concerns).
Well, well, well ... I had his attention this time.
And he had mine.
He is running a few more blood tests, starting me on Plaquenil immediately, and then probably doing even more testing. He doesn't want to start prednisone yet until the testing is completed, as it can skew results. He saw me to the door and said, "Lori, we're going to be together for a while ... this is just the beginning."
OH MY GOD ... this is long. I'm so sorry, but here's what I really wanted to say to all of you that are still reading this.
I have told NO ONE. Absolutely no one. I just can't bring myself to even admit all this to myself, much less to others who have heard diagnosis after diagnosis, and then get told, "No wait, it's this" ... or ... "No wait, it's nothing."
But I think we're now officially onto something(s) and I'm scared. Really scared. I wake up at night and find myself crying. I live alone and I'm scared of so much right now, especially a loss of independence. I know I'll pick myself up, get going, and start moving along again with all this ... but this is all so new. I'm also crying because they finally found SOMETHING ... I wasn't just being discounted and devalued again.
I really feel I have no one to talk to ... no one. My dog tries ... but she just doesn't get it and usually ends up falling asleep. :)
Any thoughts ... any comments ... anyone with a similiar story?
Hugs,
Sheila!
Your not alone. This is a great site we listen and hear you. Having lupus is a bitch and can be scary. I recommend doing research on lupus. Writing on here helps. You have been though so much. I do want to say that standing up to your doctor was great. Im proud of you. He has a degree but you own the body and know when things are not right.
Welcome Lori
It's good that you can admit that you're scared. To be perfectly honest, so am I. But at least here we don't feel so alone anymore. There are nice people here who will give you validation and support.
It is possible to live with chronic illnesses, even when it's so difficult to get good medical care. We CAN make a life for ourselves. It's very different from what we expected to have, but it's a life. There can be joy in our new existence.
i too tried so hard to get the doctors to HEAR me...from my own research i had pretty much figured out what i had...i had thought that when and if i finally got the diagnosis i would be relieved. but, my feelings were so much more complicated than that... it was yes finally validation! but, also omg this is real and it's a rather nasty disease with no cure...argh.
plus, like you i too am totally alone and so frightened of a loss of independence. i already had to leave the home i loved so much to move closer to doctors and hired help. but, i have to tell you that until i made a stupid move and fell and hurt myself i had been feelings much better with the new medications. the fall has set me back but at least i know that it's something that will heal..
my dog is totally my best and loving friend...he keeps me moving! and yes he too finds some of what i have to say sleep inducing...but, he will gladly sleep in my lap after licking off my tears... i'm so glad you have a dog! they can be incredible loving companions for those of us who are alone.
I wish you answers to your pain...peace and many years of independence.
k
Friends try to help, siblings care a lot, co-workers try to understand ... but it is quite powerful when someone can look at you (or write to you) and say, "I KNOW what you're going through."
Thanks again ... and I hope you don't mind if I continue to post as I wander all through this. I'm still so damn weepy.