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Discussion Starter · #1 ·
Hi Everyone,

I hope this finds you all feeling well and having a pain free day.

I was having a conversation with someone and decided to post a thread asking folks to share how they were first diagnosed with Lupus.

Was it based on blood work, family history, symptoms, etc...

Wondering how two people with the same "issues and symptoms" can be diagnosed differently. Some are given the diagnosis of Lupus while others may have the MCTD or UCTD diagnosis.

Then on the flip side some folks may be given a diagnosis of Sjrogens or Raynauds and yet be negative when it comes to blood test antibodies yet clearly based on symptoms they have this disease.

I hope this thread made sense as I feel like I have babbled on a bit here.:lol::lol::lol:

I know what I want to say and yet the brain does not allow me to put it clearly into words.

Hope you all enjoyed your weekend.
:wink2::wink2::wink2:
 

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My diagnosis seemed fairly straight forward in the end, in fact if anything it came as a bit of a shock.

Looking back I guess I may have had some symptoms for years. But the path to diagnosis for me started in Feb 08. I had a rash on my shoulder that looked a bit like shingles (which I'd had at least 5 other times before). My doctor always used to tell me it was shingles, but the last couple of times I insisted on blood tests and swabs, since if it was indeed shingles, then the herpes zoster virus should be present in my blood. It wasn't. The rash was accompanied by a fever and chronic fatigue. I was unwell for over a week.

I went to the GP in April as I still felt fatigued, and I had blood tests for anaemia and thyroid. They were negative. I'd had tests for both before, and had been anaemic a year or two before. Thyroid function was always normal.

Then one day in July last year I woke up with numb hands. I was terrified, particularly when it didn't get any better after a day or two. Went to the GP who immediately referred me to outpatients at hospital for further tests. First appointment was September last year - the outpatients consultant told me he thought my symptoms were autoimmune, and he carried out a bunch of tests, including ANA. It was positive at 1:640 but he thought it was a false positive as I had a chronic chest infection. Went back in October and it was repeated, same value. Sent for a nerve conduction study, which was fine. December the consultant sent me back to my GP for referral to a rheumatologist (quite why he didn't refer me direct is beyond me, as it wasted another month). By this time, I started having other joint pain, my right foot in particular, and constant skin flares, including what I now know to be the butterfly rash which for me just looks like I have sunburn on my cheeks. Had my first rheumy appointment in March 09, history taken, looked at my medical history over the last few years, second follow up appointment in April I was told my symptoms were lupus like and I was put on Plaquenil and given a follow up appointment for October.
 

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Hi! My story! Went to docs because I thought I was starting with menopause symptoms and felt tired etc. They said they were concerned because I had had a few blood tests showing low white counts..as far back as three years ago but not low enough or constant enough to worry about at first but had dropped conciderably now. they referred me to haematology, then rheumatology for the muscle and joint pain. Bone marrow biopsy and more blood tests and they said sjogrens. treated me on plaquenil for that for over year now. now tell me it is lupus and sjogrens. Been very good at finding out as only really been ill at this level for two years. See rheumy and haemo consultants once a month in turn and now waiting for bone scan and skin biopsy and dermatologist. Hope you all ok.
 

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My story might be a little different as I am MCTD, not just SLE. But here goes:

I started having trouble with bad pains in my wrists and knees, GP did blood. blood came back bad, on multiple levels, sent me to an internist who specializes in Rhuemy stuff. Now I was in the Floida Keys and no Rhuemy was available withing 200 miles. Anyway, saw this lady and she dx me with straight RA. I started metho and enbrel, and pred. did that for a while, started having seious skin involvement, saw a miami doc who dx me with Fibromyalgia and sent me on my way. I was doing pretty badly so we moved back to the mainland, to Maine. saw a wonderful rhuemy here and he thought only Sclero, not RA. Put me on classic Sclero drugs. I was getting worse by the day. He sent me to see a specialist at Johns Hopkins, that is where I was dx with MCTD and put on Cellcept. Miracule drug for me by the way!

Up until recently, i had been doing very well...but now, well, not so much...:(
 

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hi all

thanks for posting this message karol. well my story. For years i have had joint pain but put this down to having a growth condition and always being told my joints may get stiff etc over the years. Fast forward to my 20's and i always noticed my mouth was dry and got thrush now and then, also bad back and joint pain. What i now know is hives, very dry skin, extreme exhaustion. feverishness and generally feeling unwell. I had my baby in aug 07 and then my problems really began. I had a c section and then got an infection. My joint pain was unbelievable and i was hospitalized for what they said was a blood infection but now know was a bad flare and i was showing cutaneous vascullitis on my lower legs. I also had hair loss and could barely function. All this happened almost within a month of my son's birth. My gp said something autoimmune was going on and mentioned lupus. I got referred quickly and my ana was over a thousand and my Rhum factor and SSa antibodies were high. Also raised crp and esr. Based on my sympoms and positive SSa i was diagnosed with Primary systemic sjogrens. Dr also says i may have lupus overlap as the two diseases are very similar. I am on plaq 400mg a day and feel alot better.

annie x
 

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Hi:

I had a rash on my arm that looked like ring worm. It wouldn't respond to normal treatment so I went to the dermy. A biopsy later I had a DX of Tumid Lupus.

Research did not reveal much about this form of lupus, so second opinion at University of Miami changed DX to SCLE.

Time and symptoms led to the rest of the multitude of diagnoses attached to autoimmune famiy of things.

It has now been determined that I have moderate Kidney involvement, so the journey continues.

Stephanie
 

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took many years to get a diagnose but in the end it wasn't until I was admitted to hospital with pleurisy and pneumonia did they find after a CT scan that I had shrinking lung syndrome which then confirmed Lupus. It took about 5 years to get that but symptoms started when I was 11/12 years old.
 

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florie
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My lupus was found by hand rash

Hi Karol,
I used to get sick alot with fevers when i was in my 30's. Had facial rashs, low grade fevers and felt tired all the time.
I think it was 7 yrs ago i was diagnoised with lupus. I had a bad rash on my hands and my fingers. My finger tips were sore and would bleed. My job thought it was work related for i worked in a laundry room. So i saw a workman's comp. doctor. He looked at all my symptoms and said i think you have lupus. I had the malar rash on my face too. He sent me for blood work and sure enough he was right.
I wonder if the hot laundry room and constant hand washing flared me up , cause i was even getting abcess's. He was an Asian Dr. and later i found out he went back to his country. His office sent me a letter and when i went there to understand about the lupus the secretary was cleaning up the office for she said the doctor is no longer here and went back to his country. She explained my findings and said to see a Rhuemy and that's how it went on to finding out about having lupus and doing blood work all the time.

Florie
 

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Pamela b
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Hi

This is a very interesting thread .
I was diagnosed this year after may year of increasing ill haelth and very debilitating syptoms. I had constant rashes, abnormal liver enjymes and lost 4 stone in weight over 5 years, changed my life because I was told I was tired through doing too much.
Even a stay in hospital last year with pericarditis and pheumonia didnt pick it up.
The whole of this year has been very bad and when they found a heart valve problem had developed and still said I was healthy but depressed someone we knew asked if I had been tested for Lupus. I said not I had never heard o f it and having checked it out thought it was an option.
I got myself referred and bloods and everything confirmed SLE and sjorens
IF that person had not mentioned it I dont think it would have been picked up yet.
I dont know when the symptoms started but think maybe quite some years ago as tests for thryoid in 2000 showed very high levels of anti bodies. Most of us seem to just accept that we are not that well and also what the professionals tell us or is that me ?
Pam
 

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The one and only
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Hi Karol... It took only a couple of years for me to be diagnosed... In 2004 I went to the doctor because I was losing pigment in my hands (vitiligo) and my fingers would go numb and change colors while at work (raynauds) I went to my GP she ran all the test and my ANA came back very high so she knew that I had something autoimmune going on and sent me to a rheumatologist. Once I met with my rhumy, she did more tests and the Anti-DNA test came back positive sed rate high at that point she thought I was lupus like/scleroderma, but diagnosed me with Undiffereciate Tissue Disease.... it wasn't until early 2005, my platelet dropped down to 9000 and I ended up in the hospital for a week. I was given an infusion of platelets and prednisone and they went back up. and then in late 2005 they dropped again the lowest was 5000. My doc suggested Rituxan and in early 2006 is when my doctor finally said yeah, I think you've got lupus.... Fast forward to 2008 and I started having problems with my platelets again and had to do the Rituxan treatments again... this time not as successful because my body started rejecting it and I had to stop with only 3 infusions... and then in early 2009 I started showing more signes of joint/hip pain, ulcers on my fingertips, major fatigue etc. I was retested and it came back with the a positive U1-RNP and my rhuemy then said Mixed Connective Tissue disease.

So that's where I am at this point.. Summers are always the worst for me. I feel like I am in a continuous flare and can't get out. My diagnosis make sense to me though. I have all the symptoms that are listed for the disease. I just wish we could find a cure because I know once they find a cure for one of these autoimmune disease, it would probably take care of the rest of them.

Hope you are having a pain free day!
 

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Lisa_S
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Very interesting thread!

I think my first symptom was a reaction I had to the sun when I was in Grade 2 (itchy rash on my trunk - I was sent home from school, I think the teacher thought I had chicken pox...) I've also had Raynaud's phenomenon for as long as I can remember.

Thy symptoms that led to an actual investigation started when I was 13 - my main complaint was an Achilles tendon problem that I thought was due to a dance injury, and some recurrent strep infections that I didn't connect to my "injury" in any way. I think the initial thinking was that I was depressed, but back then (mid 80's) I don't think there were any treatment options for kids anyways, they just figured I'd grow out of it. The tendon problem was followed by more mysterious and random joint pains, swollen joints, weird petechiae on my legs, rashes, and fatigue. The petchiae were actually kind of nice to see, becuase they were the first really visible, non-arguable symptom I showed - everything else could be chalked up to some kind of psychosomatic illness. Over the course of about 4 months I saw a hematologist (I think because my white blood cell count was low, but I might be wrong about that...) a dermatologist for the rashes, and a rheumatologist who thought I had something called Henoch-Schonlein's purpura. There may have been a couple of other specialists in there as well - brain fog was kicking in, and some of the details are a bit fuzzy...

Things got progressively worse (and more serious) over the next 4 months. I think the first symptom appeared in the summer, but by December I was sleeping most of the time (20 hours a day was pretty standard,), had lost about 20 pounds off my already slender dancer's body, and was showing all kinds of additional symptoms - fevers, hair loss, mouth ulcers, pleurisy and pericarditis, major brain fog, and still had lots of joint pain and rashes. Close to Christmas I developed the classic malar rash, and made a couple of trips to the ER because of pain, and my dad (a GP) says he knew at that point it was SLE, and requested that the derm do a biopsy to confirm.

Which of course it did - in retrospect I think my symptoms probably added up to SLE within the first six weeks or so, but pediatric cases aren't common, so they focussed on the obvious suspects like JRA first.

That's my story more or less. I'm actually relatively lucky in that the diagnosis was so quick. For me the next 2 years were worse in that I just couldn't wrap my head around the fact that they knew what was wrong, but couldn't "fix" me. I started treatment in December or January, but it was years before we got that flare under control - I've vowed to never let things get that bad again. I know it's out of my control almost entirely, but my docs all know that I prefer aggressive treatment over a "wait and see" approach, and I'm religious about getting regular lab tests.

Lisa
 

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hello!
I was diagnosed on 2006, I was 26 then. The thing that made me visit for the first time a Rheumatologist was my positive ANA. Till then I never heard before anything about SLE. From then I as was reading books and articles, I realised that what I was reading was my life...meaning that for many years I had symptoms, many of them but nobody believed me and nobody ever took my symptoms seriously. Since my diagnosis I am living every day with a mild flare, low fever, extreme fatigue, pain on my knees...I am on -off steroids, I have tried many treatments and I am still in the beggining.....:ermm:
 

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Well, around 13 I started noticing joint pain, but I always brushed that off as being related to tennis, or my bra sitting funny. And for as long as I can remember, I've been very very sensitive to the sun, and it gives me funny rashes. And I get a pink rash across my cheeks and nose. None of this I connected with anything.

Around the time I started college, my glands started swelling up, and never going down, and I was always tired. So I went to a bajillion doctors, and was tested for every scary thing they could think of, and was positive for nothing. And so, I resigned to the idea that it was all my imagination. Just anxiety and depression.

My last semester of college, after I realized I'd been sleeping more than I usually slept, which was a lot anyway... And I had been hiding how much I was sleeping from people, I went to the doctor and told them I was just depressed and sleeping a lot. They took bloodwork to rule out anything physiological... And called to say "Good news, it's not in your head! You have lupus!" How that's good news is beyond me.
 

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Check marks

Good idea this, Karol!
We had a friend who was an MD's receptionist. Talking with the MD and his pain nurse about my troubles, the MD became interested. On my first visit he checked some boxes on the blood test request form. The pain nurse and receptionist checked all the other boxes, except pregnancy.:lol:
On my next visit, the Dr said, "You have extremely high Anti-Nuclear Antibodies." I thought that meant that in case of an atomic war I would outlive other folks. Not so, as he said, "You have Systemic Lupus." So I guess I owe my diagnosis to a few (probably very improper or even illegal) extra check marks on a blood test requisition!
Douglas+
 

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Discussion Starter · #15 ·
I find it interesting how many people with Lupus have a lot in common and yet there are also so many differences. I guess in a way it gives me a better understanding why Lupus can be so hard to diagnose. It can tell a different story every time.

I hope your all doing well tonight and a BIG THANK YOU to those of you who replied to this post.:wink2::wink2::wink2:
 

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Several years ago I started having joint pain all over and arm pain on my left side along with muscle spasms and nerve pain. Then the left leg and arm started getting weak and I'd get a funny tense/tired feeling along the left side of my face, mostly over my cheekbone. The family doc thought it was from herniated discs found on a scan and sent me to various neuros and neruosurgeons who also thought that until I started those face symptoms. Then they suspected MS but the brain MRI was clear. One neuro was not convinced and said, "Well, you don't have MS TODAY......." clearly indicating that she fully expected it to show up on a future test, based on my symptoms.

Finally a neurosurgeon referred me to Wake Forest Hospital in NC because they are on the cutting edge of dxing MS (he still thought I had it too). The wonderful doctor there was the first and only one to do blood work, after asking a hundred questions and learning that my niece has lupus and my sister has RA. They found a high RA, ANA, ANCA and sent me to a rheumy who did his own blood work to confirm. For the first year or so the dx was UCTD, then changed to SS and lupus. I could have been dxd so much sooner if only one of the other doctors did the proper blood work. I wish I had known enough to ask for it myself.
 

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Hi Karol,

Very good idea for a thread. Thank you.

Oh...my..where to begin? My story began about 17 years ago. I was an avid gardener. I spent most of my days in my large garden. I noticed I was more fatigued, and needing to sleep a lot. I felt depressed too. I attributed my fatigue, and depression to family stress. I was raising teens, afterall. :) I then developed muscle pain. I went to my G.P. and he put me on an antidepressant.

Then came a cycle with me going to the dr, and him telling me that I was only depressed, and putting me on yet another antidepressant over, and over for about 5 years. By now, I couldn't work in my garden. I was sleeping more than ever, always depressed, and feeling pain in my body. I finally mentioned to my G.P. I thought I may have Fibromyalgia. (Yes, it was my idea.) Nothing changed, I continued feeling miserable, going back and forth to my G.P., in the mean time I was almost always on an antibiotic for a sinus infection, bladder infection, ear infection or other infections. Also, I often would have to go back to the dr, for repeat treatments of infections. My G.P. finally began drawing my blood and checking my A.N.A. and other blood values. Nothing showed up in my blood. Mentally, I was in decline.

I was admitted to the mental hospital for depression, and was diagnosed as being bi-polar. I was put on Depakote for the first time. I gained a lot of weight. It did help for a while (mentally). Physically, I just continued to decline. This is about 5 years into this..I have been diagnosed as having Fibromyalgia and bi-polar illness. Another two years passed, and I again was hospitalized and treated for bi-polar illness. I remember, being in so much pain..I cried. I told my dr, in the hospital and he just blew me off.

Another 4 years pass..while living in pain and misery, suffering a bout of being paralized on one side of my body. I saw my first Rheumy. She asked me if I worked, and prescribed me 60 mgs of prednisone and lodine for two weeks, told me not to lift over 15 lbs, because of a herniated disk in my back. Still no answers. By now, I am having so many symptoms I know, I am either dying of cancer or having some other fatal illness. I have a bout of psychosis, I go to the same G.P. and demand he find out what is wrong with me. (My husband is with me for support.) He and I have words. I demand to be referred to a Rheumy. I finally get into see the Rheumy, that didn't want to see me, because I only had Fibromyalgia. :)
He is rude to me on my first visit. At the end of the visit he asked if he could take my blood to send off to a lab in C.A. it will be six weeks before he gets the results back.

I get a note in the mail telling me I have lupus, and to make another appt, with him. I go back and he starts me on first line of treatment Plaquenil. I was undertreated..but it was a start. Yes, after six mos, or longer, my body pain and fevers did ease a bit.

It took years and years for me to be diagnosed. I had to diagnose myself. All the dr, did was write the prescriptions. If I had not learned how to use a computer, I doubt I would be alive today. That is pretty much the long and short of it, I suppose.

Thank you, for reading.

ox Sandy
 

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Discussion Starter · #18 ·
Wow Sandy I will never complain again about it taking a long time for me to get the right diagnosis. My story is complicated and yet not nearly as much as yours is. I am sure you spent years very frustrated and feeling like no one cared.

I am happy it all got sorted out......THANKS TO YOU!!! Pat yourself on the back my friend.:wink2::wink2::wink2:
 

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HI

I had a couple of viral infections about 2-3 years ago and between them got raynaunds diease. last year got told I was aneamic then about the same time kept on going to doctors coz my feet were really bad and spent half the time hobbling. finally the doctor sent me to the rhuemy who did blood tests and told me I had lupus. then blood tests last months said I was ana positive.

:)
quiet
 

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How Was I Diagnoised?/was I?

KarolH;549585 said:
Hi Everyone,

I hope this finds you all feeling well and having a pain free day.

I was having a conversation with someone and decided to post a thread asking folks to share how they were first diagnosed with Lupus.

Was it based on blood work, family history, symptoms, etc...

Wondering how two people with the same "issues and symptoms" can be diagnosed differently. Some are given the diagnosis of Lupus while others may have the MCTD or UCTD diagnosis.

Then on the flip side some folks may be given a diagnosis of Sjrogens or Raynauds and yet be negative when it comes to blood test antibodies yet clearly based on symptoms they have this disease.

I hope this thread made sense as I feel like I have babbled on a bit here.:lol::lol::lol:

I know what I want to say and yet the brain does not allow me to put it clearly into words.

Hope you all enjoyed your weekend.
:wink2::wink2::wink2:
MY WHITE CELL BLOOD COUNT WAS VERY LOW AND I WAS ADVISED TO CHECK IT OUT...I WAS FEELING FATIQUED AND WAS IN PAIN BUT I HAD ALREADY BEEN TO MANY DOCTORS WHO SIMPLY BRUSHED ME OFF BECAUSE I DIDN'T LOOK SICK AND SEEMED FIT.
THEN AFTER A SERIES OF BLOOD TEST THEY TOLD ME THEY WERE GOING TO TREAT ME FOR LUPUS.
THEY TOLD ME NOTHING ABOUT THE DISEASE, WHAT TO EXPECT, HOW TO DO ANYHTING PREVENTIVE, NO RECOMMENDATIONS ON LITERATURE TO READ-NOTHING!
THAT IS HOW I WAS DIAGNIOSED-THANK GOODNESS FOR THE INTERNET!
PEACE
MIJIZA
 
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