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Lupus??? So upset, long post.
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Lupus??? So upset, long post.

Hello,

I just found this board and am looking for others that might understand what I am going through. I am sorry if this is too long of a post, I am so upset right now. I hope this is in the right board.

I have had so many symptoms for 4 years and they are getting worse and more painful. It started with pain in my hands and feet, swollen glands in my neck, low grade fevers and sore throat. I kept getting more and more tired. It lasted for 4 months, doctors looked for hiv, strep, mono, hepatitis, and thyroid. Nothing was found. Then the fatigue got worse, the pain in my hands and feet got worse. I kept going to the doctor because I was so tired, my throat was red and hurt and my bones hurt...they would draw the same tests... they were all negative and then told me I was too stressed, worrying too much and needed to exercise more.

I became too tired to exercise and stopped, I knew something had to be wrong with me to be so tired all the time. I was one of those motivated, self starter, organic food, exercise freaks that took great care of myself... I got a cold a few times a year and that was it. All of that had changed.

I started losing tons of hair and became allergic to the sun and fluorescent lighting. My family told me I was a hypochondriac and I loved to "play doctor", I was crushed. I was struggling to get out of bed in the morning due to stiffness and pain, even though I slept I never felt rested. When I went in the sun, I got red rashes on my nose and cheeks, itching raised welts on skin exposed to it and purple bands on my nailbeds. I started avoiding the sun, wearing long sleeves and hats and spending as little time in stores with the lighting that made things worse.

Then I got huge ulceration of the septum in my nose. My doctor could not explain it and told me to put vitamin oil on it. I then had a pin point pupil one night that someone noticed and my eye started squinting so I went to an eye doctor. I had iritis of the eye, they put me on steroid drops for the eye and my eye doctor told me that can be an early sign of autoimmune disease like lupus that is attacking the central nervous system. I had never heard of lupus. I started getting ulcers on the roof of my mouth. I started to get tremors in my hands, confusion and horrible head pain. They did workups for MS and found lesions in my brain that were unexplained in origin but not MS compared to how they acted with contrast, they called it ischemic changes of unknown origin. I have four of them. My fingers in my hand started to get swollen and crooked, and my wrists were continually swollen and they get white or red in hot or cold temperatures. I was sent to a rheumatologist. I had High C reactive protein, CPK, Anemia, a pulse of 144 beats a minute, high platelets. ANA negative so they did not make a diagnosis and told me to come back in a year. I started having nausea, vomiting, loss of appetite, diarrhea and lost 27 pounds. I developed orthostatic hypertension and began fainting. I got a headache that was told is unknown in origin but is caused by brain inflammation... I had a spinal tap and went into systemic shock on the table. They put me on 60mg of prednisone a day for 13 months to control the headache. When the headache was uncontrolled I would get disorientated... confused and faint. I could not speak works but I could think them and I could not say what day of the week it was.

I get much worse around that 'time' of the month. My dermatologist saw rashes I got on my way to the office from the sun and scheduled a skin biopsy. When I went to the biopsy I had no rash, the biopsy showed evidence of a connective tissue disease that was 'vascular' in origin but it did not identify in a pattern that they knew what it was. My dermatologist told me I might have lupus but I need to see a rheumatologist again. I have had xray from my dentist that shows my jaw has been damaged by something that looks 'inflammatory'. My hand and foot xrays show inflammation and small amounts of bone erosion. I was told I have nailbed capillary loops and to stay out of the sun by my dermatologist.

My doctor has drawn multiple panels for immune disease. Twice my complement component C4 has been low and C reactive protein high, platelets are often high. ANA always negative. Anti DNA stuff, negative.

My family finally believes me because they see how sick I get, how much pain I am in, they have taken me to the ER because I faint and I do not know what day week or month it is. I recently had lab work done by my doctor and I am anemic, vitamin d deficient, dhea deficient, have high serum creatinine and something is wrong with my thyroid.

My urinalysis has not been normal for 2 years, it is very cloudy/hazy and has had trace protein before. I have what I call 'flares' sometimes and they come on if I am very stressed or if I spend more than 10 minutes in the sun. They start with extra fatigue, swollen glands, rashes, ulcers on my nose and mouth, head pain, fainting, vomiting, extra bone pain, diarrhea and will last for up to two weeks.

So I went to a rheumatologist again... they looked at the anemia, high CRP, CPK, low complement C4, eye doctor report, derm report and told me I can not have lupus because I am ANA negative.

Even though I am ANA negative something has caused bone erosion, iritis, resting pulse of 155 beats a minute, brain lesions, fainting, UV allergy, ulcers in my nose/mouth, headaches that are unbearable, chest pain when breathing, GI problems, abnormal blood urine and inflammatory markers. Now something is wrong with my thyroid.

What is wrong with me? I am so sad that I can not help myself get better no matter how hard I try. I feel so pathetic and hopeless. I thought maybe I was making it up, maybe everyone was right... until I saw MRIs with lesions and abnormal labs.

I have a family member with CNS lupus, one with Chron's and a few with RA. Can I be ANA negative lupus? Is it maybe negative when the lab is drawn but positive other times? I am so upset that something is wrong with my thyroid... is this mystery disease attacking it? If my brain, eye, heart, blood and thyroid are affected... what could be next?

I am so scared and upset. I still do not have a name for what is causing all this and the last rheumatologist told me it was not lupus and said maybe a seronegative RA?

I'm sorry but I am tired of getting so sick and not feeling better. I am going to doctors... I try to stay positive in my attitude and take care of myself but it is so hard now. I am in so much pain, so tired, or struggling with GI stuff. Now insomnia and more hair loss, hoarse voice maybe due to thyroid?

Take care you all. Thank you to any kind soul that is able to read through this huge post and offer any type of advice or experiences.

Yuri



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11 Comments Post a Comment
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Hello!
Welcome to this sight!
I don't have answers for you but someone will be along who does. : )
You chose the right sight to come to! I have gained so much insight , inner peace and made some very sincere, lovely friends here on Med Help!
I can't sleep the third night in a row now, so I was reading some questions and came across yours. I truly understand your post!
It's so hard to wait for the answers we so long to have RIGHT Now!
I pray you find answers real soon and above all, I pray you find relief from your pain today!
HuGs!!! NiCee
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1290799_tn?1272086028
Hi Nicee,

Thank you so much for your kindness and prayer. I hope that you were able to get some much needed sleep. As many of us have experienced... insomnia = flare. I will also keep you in prayer for comfort and relief.

I look forward to the boards and finding some ways to better deal. It is comforting to find a community of people that really understand. Such a wonderful break from judgement, pity and apathy!

Have a great day,

Yuri
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434278_tn?1324709825
Hello and welcome!

I know how hard it is to go through things like you are...and especially when you aren't getting any answers.  It took over a year and a half to get diagnosed of lupus.  

So many of your symptoms sound familar.  Have they checked for Lymes disease or Rocky Mountain Spotted Tick.  Something is going on and you need to encourage the dr.to keep probing until they find out.  Usually when prednisone is given to antoimmune disorders, they get better.  It sounded like you didn't.  (Am I correct?)  

I'm not real sure the symptoms of things like luekemia.  I'm just trying to make a stab at other things that could cause the elevated crp and anemia, etc.  

The one thing that helped me get dxd is I spent time in the sun prior to my ANA lab.  About 10 min on a hot July day brought my ANA up to 1:2,560.  The drs. had to take notice of that.  Otherwise, I stay out of the sun.

God bless you sweetie
I'm praying for you,
Kara
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I have Lupus and am lucky to have a one of a kind rheumatologist.  I have had my ANA come back negative, long after diagnosis.  I asked my rheumy about that and he said you CAN have Lupus and your ANA show up negative...I guess it's a matter of getting the blood work at just the right time.  My best advice to you is to keep pushing your doctors to find the answer...you have to be your own best advocate.

I personally think it sounds like Lupus.  I've had the sore throat (for nearly a year straight at one point), chest pains, swollen everything, muscle pain, I'm anemic, have had damage to my jaw too, just so many things sound familiar.  I don't have much knowledge on other diseases though.

Do you have access to trying another rheumy?

Sending healing thoughts your way.

Erin M
Omaha
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Hi Kara,

Thank you so much for the prayer. I have had testing for lyme and so many other disease/virus/infection I can not count them all! My doc has excluded infectious and contagious disease. Re cancer I certainly hope not but have not had blood values return that make that appear suspicious. I had a very unkind doctor tell me in the beginning "if it was cancer you would be dead by now". Talk about a professional opinion!

Can you please share with me how long between the sun time and having the blood drawn? Was it 30 minutes... 12 hours? I will take a small amount of sun (and the resulting sickness) if it gets me closer to knowing what this is.

Thank you so much and take care,

Yuri
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1290799_tn?1272086028
Hi Erin,

Wow you had the sore throat too and jaw damage??? I have had chest pain with breathing also off and on (when my other pain is high). My symptoms appear very lupus like and I have had complement C4 drop very low from time to time.

I have gone to 3 different rheumatologist over the years and they all have spoke of lupus but not diagnosed because I am ANA negative. They say I have 'lupus like symptoms'. I will be meeting with an endocrinologist in a few weeks to see what is going on with the thyroid. I need someone to explain what was happening with the high serum creatinine because I read that might be a kidney issue.

Basically I am very upset that I have so many symptoms affecting my daily life... can not go out in the sun at all and keep getting sicker. I do not want something horrible to happen and will keep my chin up in the meantime. My dermatologist thinks it is lupus. My primary doc wants me to keep working with rheumatology and I feel horribly sick and frustrated. All the other doctors I have seen for things like brain lesion/tremor, eye doctors for iritis etc want me working closely with a rheumatologist also. I do not want to be a self diagnosis type but I know something is very wrong and am not aware of many diseases that make one allergic to the sun and cause these particular symptoms that I am having.

Thank you for the healing thoughts and right back at you with healing thoughts!

Take care,

Yuri
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434278_tn?1324709825
Hi Yuri,

I spent about 10 min in the sun just prior to walking into the dr's office.  I took maybe 45 min to an hour to process the visit and the lab.  So, the lab was done approximately 1 hour after the sun exposure.  I was actually feeling pretty good that day, but didn't the next day.  It is always the day after that gets me.  

There are 11 criteria for a lupus dx.  You must have at least 4 of the 11 to recieve a dx.

They are:
1. malar rash over cheeks (butterfly rash)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash
4. oral and nose ulcers
5. arthritis
6. serositis - inflamation (inflammation) of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

The low comp level and the elevated creatinine all point to kidney problems which "can" be associated w/ lupus.  Have they don't a urinalysis, and is your protein elevated?

How many of the 11 criteria do you have?  Which ones are they?  

Ask your dermatologist if you could come in for the biopsy when your skin condition is flared up.

Another thing that might be going on is RA.  It usually takes years for this to show up in the lab.  But you already have the high C reactive protein.  Lupus can make your joints swell, but normally don't cause the joints to become disfigured.  Has your dr. been able to note your joint problem?  Autoimmune problems are really tricky because one minute you feel fine or good enough you can fake it.  And, as quick as turning a light switch on, all the symptoms come on with a vengence.  It can make you feel crazy.  That's one of the reasons why they are difficult to dx.  

My prayers are with you.
God will help you through this.
Kare
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Hi Kare,

Thank you so much for your prayer and reply. Next ANA draw I will get some 'sun' time. For the past two years urinalysis are abnormal visually (cloudy) but no infection found and once I had 'trace' protein but it then cleared up on the following UA. It was only trace but I was shocked since my entire life UA was always normal (until recently being cloudy).

For the Dx criteria I have the following:

1 - rash on cheeks and nose, it gets really red if I have flare or sun exposure. My chin and neck are pale but my nose and cheeks will be red. I did not react to rosacea medicines.

3 - UV allergy resulting in rash, septum ulcer, ulcer on roof of mouth, capillary changes in nail beds, extreme fatigue, dizziness, vomiting and sometimes fainting, chest pain, diarrhea. The rashes start immediately and the other stuff starts in a few hours and then really bad the next few days.

4 - Huge nose ulcers and small ulcers occasionally on the roof of my mouth. My doctor and dentist can not explain the cause.

5 - Multi joint involvement. Fingers, Wrists, Hands, Feet, Ankles, Knees, Jaw.

I have had central nervous system involvement with iritis and brain lesion. My doc has considered RA but the lesions and skin sensitivity to UV, lesions etc can not be explained. Now something is wrong with thyroid. What really worries me is that I do not want more and more damages to happen and one day 'oops' my kidneys and or liver are damaged. I do not want to think worse case scenario here I just get scared sometimes.

My dermatologist did tell me the next rash I get to call and immediately come in so it can be dermal punched for a biopsy. She told me my previous biopsy did not rule out lupus since it was abnormal and showed a vascular and connective tissue disease. She then said no matter what it is I need treatment regardless of what it is called and to avoid the sun.

Thank you for your prayer and reply. I see an endocrinologist in a few weeks to see what is going on with my thyroid. I will have my primary order an ANA and will sun for a few minutes to see if that does anything. If not it sure causes symptoms whatever it is.

God bless,

Yuri
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434278_tn?1324709825
It looks like maybe something in your lab work will be enough for you to get a dx.

Keep your attitude up.  That really goes a long way.

Blessings, Kara
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Hi Kara,

It would seem that way... I just want relief. The past few weeks my lips are starting to get swollen and blistered but my tongue is fine. I thought maybe an allergic reaction to something but then my lips get these white flakes of skin all over them and they peel off. This has not happened for a few years and usually happens when I am in flare. With summer coming I get more UV when driving and that could have something to do with it. I am going to a dermatologist and endocrinologist next week. I found online people with lupus often get flaking lips, blisters and swollen lips because the lip tissue is highly reactive to UV.

I have been doing 20 minutes of exercise almost every day and working on healthy diet changes... spending more time resting.

Definitely a challenge to keep my attitude up but I work on it daily. I have had abnormal lab values and skin biopsy but it has not identified the specific inflammatory disease. Looks so lupus like and I am feeling awful. I will have one of the docs next week order a new lab to see if something shows up.

Blessings to you also,

Yuri
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434278_tn?1324709825
Hi Yuri,

I have had problems w/ my lips for many years.  I never connected it to lupus, but that makes sense.  I read the other day that people w/ lupus often say they had "growing pains" when they were little.  I doubt everyone w/ growing pains will end up w/ lupus, but I remember having them so bad they would shut me down.  

God bless, keep us posted
Kara
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