Had bloodwork today and I think I have it
I am convinced I have lupus after looking over many years of symptoms that began when I was about 18, I am now 32. I went to the neurologist for migraines yesterday and he ordered blood work. One of the tests he is ordering is ANA, I had a positive ANA 12 years ago but the doctors didn't look any further into it. The reason I had the test 12 years ago was because of recurring miscarriages. Since then I haven't had anymore miscarriages and have given birth to 2 healthy children. When I was 18 I recall having a very itchy rash below my buttocks and i assumed it was yeast (I am quite thin so it wasn't due to skin folds), eventually it went away on its own and I am hoping it will not visit me again. Starting at about 18 or 19 years old I was always tired and began getting occasional headaches even though I have always had a healthy diet. Not long after that I got a rash on my hands and it was diagnosed as dyshidrosis. This rash is still with me after almost 14 years and it itches, leaves cracks in the skin near the joints on my fingers, and sometimes forms water blisters. It has also caused my nail bed pit and a few of my cuticles seem nonexistent. Not long after my 19th birthday I got a horrible burning rash/dry skin under my eyes and just below my nostrils on my upper lip that caused my mother to suspect I was on drugs, fortunately it went away on its own. I have been suffering from bouts of depression and extreme fatigue since my late teens, these leave me ashamed and feeling lazy, but I really want to be active and involved. SSRIs and other medications never really helped. The only thing that has every really helped is opiates, but you can't take those because of the addiction risk. When I was about 22 I started to get a bad headache once or twice a month with the occurrences increasing as I get older. Now I have a migraine at least 15 days out of the month, some days are worse than others. In that past 4 years I have been getting sores inside of my nose and they are very painful, I was worried it is herpes in my nose but my doctor looked and said it is just sores. About 2 years ago I started smelling ammonia for no reason at all, no one else can smell it and when I tell the doctor she seems confused. Around the same time I started to smell ammonia I started seeing shadows and things that aren't there, but I don't tell anyone cause they will accuse me of being crazy or accuse me of trying to get attention. I went to the dentist last month convinced I have a cavity, they took Xrays and didn't find a cavity but my gums are receding and I have very sensitive teeth. This past Friday I had a bad headache that wouldn't go away even after trying 3 different medications and Friday night my hands suddenly lost feeling. When I lost feeling in my hands I went to the emergency room but they didn't do anything. They gave me medication in an IV to get rid of the migraine and took blood. They found a high white blood cell count and sent me home with a prescription for Augmentin. I finally went to my long awaited and fought for neurologist appointment yesterday and he spoke to me about my headaches, checked my reflexes, asked me if it hurts when I eat because my jaw is very loud, ordered a brain scan, and blood tests (ANA and many other tests). Today I got the blood tests and Sunday I have an MRI appointment at 3. I really hate this because I feel I am young and it is in my imagination, I mean common no one could possibly just feel like crap all of the time right? I even hate to tell people because they accuse you of laziness, hypochondria, or attention seeking. But I am not lazy, I don't want attention (I hate pity) and I am not a hypochondriac. I just want to feel good like I see other people feel and I wonder why I don't feel that way. What makes it even worse is that doctors seem to minimize everything, seem unwilling to connect symptoms, and accuse you of self diagnosis. Anyway anyone who has read this entire post thank you, and any suggestions would be much appreciated.
I forgot to add I get horrible pain my my hips that radiates all the way down to my knees. It can only be described as menstrual pains that reach the knees, but it isn't anywhere near that time of the month......this has been going on for about 2 years.
Menstrual pains are from cramping, could your legs be cramping? Is it in your thigh muscle, or does it feel deep at the bone? Is it worse in your joints?
I remember once upon a time I could describe my pain : ) I knew what it felt like. As time has gone on, I have become accustomed to the pain. It hasnt gone away, but thats life. Its made me insensitive to other pains in my life, such as when I separated my shoulder, I didnt know. Ive injured my achiles as well but CBF doing anything about it, there is too much wrong with me as it is, another thing for my doctor to consider would just be too much.
Anyway... to get back to your posts lol : ) Dont doctors HATE it when you have put some research into why you feel as you do. I had a rheumy tell me that I was lucky cause my lupus wasnt bad... while at the same time doing zero tests to come to such a conclusion.
Lupus headache is very common. This could be something you are experiencing. You are no doubt looking forward to finally putting a name to your ailments and getting some treatment happening so you can finally start to feel well again. Everyone has difficulty getting their diagnosis, the only times I have heard of easy diagnosis is after a medical emergency flare... such as in my case. Not everyone is so 'lucky' to have a clear cut case of lupus. I presented with facial rash, joint pain, positive blood work and had just come out of ICU after a PE after premie labour. I had also had previous miscarriages and the only thing that stopped that from happening the last time, was my bubs placenta was attached to a tumour on my uterus and it acted as a filter for blood clots lol : D now thats irony for you.
Anyway, feel free to vent your diagnosis frustration here... we hear ya! And good luck, I hope you get some answers with these most recent tests.
Hello EmAlie, Welcome to our wonderful family. If you spend time on this forum you will hundreds of stories like yours. I had many ER trips and specialists before they figured it out. Hold on tight and learn all you can. Keep record and pictures of everything you notice. Get copies of bloodwork always. Vent here with these wonderful validating folks and you will not be alone in this rough journey. You will also find many laughs here, and this is good medicine for the suffering.
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yes you have something going on.
there is 63 types of auto immune disorders.
there is a thread listing all of them.
many of the symptoms can overlap also.
sometimes it is not easy for the doctors to come to a diagnosis, even when we know what is happenning.
It sounds like your symptoms started the same age as me, i was 18 and i'm now 42 but was diagnosed 3yrs ago as being born with Lupus.
If you ANA was positive 12yrs ago they really should have took furthur action then and lupus can cause miscarriages and also to stop women getting pregnant as i've never got caught for a child but did have seizures and depression start at 18 and about 7yrs ago i was sterilized as if i did have a child it was to dangerous.
The headaches happened with me at 18 all down my left side of my head and they got that severe i used to hit my head up the wall to numb them and i still have the headaches now. Like yourself i've got manic depression now and lupus thrieves on stress and depression and then you'll symptoms will feel alot worse than they actually are but i have noticed it triggers my depression and then the water works start going off.
The sores up your nose do come from Lupus or any autoimmune disease this is what you need to find out, as i suffer with those also and they can be so sore and i have psoriasis and now my skin is past creams but you really need to see a Dermo for your skin and steriod based creams are excellent for removing a rash/flare.
Refering your Jaw you may have TMJ Disease (Temporomandibular Joint Disorder) which can come on just naturally or Lupus can cause that also, you need to see someone in ENT and they x-ray your Jaw and straight away a specialist can tell you the diagnosis, the loudness of the jaw comes from the joints by the ears and can be painful when eating and making a crunching noise.
Well since 18 i've had ailments like you but i've had to learn to accept a great deal but i am honestly finding Lupus hard because each morning you never know what you'll feel like or what state you'll be in, i do hope they find a diagnosis for you.
((Hugs Terri)) xxx
Last edited by Peridot20_Gem; 06-16-2011 at 08:30 AM.
I had this also and my hubby kept putting down to ciatica and no it was swelling of the joints off the lupus which does affect the hip area bad and mines gone to locking now and to release the pain while standing is terrible.
Originally Posted by EmAli