do i have lupus?!?
i apolgize for the length
For the last 6 yrs (22yrs old now) there has been something wrong. At 16 i didnt really know how to explain to the doctor what was going on and now after 6yrs of symptoms things just seem normal. I saw an allergist about a year ago who was shocked i'd never been tested for lupus...so off they sent me. (after 6yrs of doc. looking at me like im nuts i dont have much faith in them) I have supposivley gotten one of the best reheumy in the area and she is quite nice..anyways... after blood work done 2 in the last 6mths there appears to be nothing wrong except a consistantly low compliment level and i will be going back in 3mths to see if anythings changed.
my list of symptoms include:
raynauds - diagnosed at 7yrs
joint pain- in my wrists ankles and right knee, constantly in my right hip and is worsened when i sit..it moves to my back
uclers- in my mouth almost always and once in the unmentionable area(very painful)
sores on my hands- they come mostly with the sun but i do get them in winter too..their very painful and are like little red bumps ..theres no fluid in them and they dont uclerate..just dry up and go away..they tried to do a biopsy but didnt go deep enough
sores on my scalp- almost constantly..like the ones on my hands..there painful and then they dry up and go away
lack of concentration and memory- only in the last 4 yrs
my arms and legs, feet and hands often fall asleep, sometimes without any reason..and at night they my entire side will fall asleep so when i
wake up i feel paralized...sometimes i get a numbness in my toes when i wake up or do alot of walking
i get what looks like the malar rash when im hot or when i sit in front of my desk lamp..it goes away after a couple hours..but it feels like and looks like a sunburn across my cheeks and nose (its never there when i see the doc.)
when i wake up in the morning my eyes are really blurry and it takes about an hour to refocus and recently have noticed a cotton mouth kinda feeling...like i cant quench my thirst.
exhausted and ache...there are days that making my bed exhausts me and it feels like im getting the flu( i often feel like my glands in the throat are swollen at this time)
lowered immune system.. no matter how hard i try i alway manage to get sick
some of the odder one are...
in the recent years i've found i have a hard time swallowing...mostly food but there are times that i have to try to make spit and force myself to swallow it
i get really hot (and feel the exhausted) around mid afternoon 3pm-4pm. My temp goes from about 98.2 to 99.9 on a consitant bases...whether this is considered a low grade fever im not sure. And im ALWAYS on fire at night...im not actually having night sweats but i've woken up from the heat and my boyfriend has stated how hot i feel..it just doesnt seem normal.
I wake up quite often in the middle of the night to pee...and probably go more during the day then the average person...just me or a symtom? i dont know
i've noticed mood and personality changes..soemtimes depression but i havent quite figured out if its being caused by the whatever is wrong with me or if me feeling ill is whats causing the mood difference
one of the weirdest things i've noticed is i cant get full... im constantly starving and out eat my boyfriend and my roommate combined. There are times that its so bad and the hunger pain is so sharp that i feel like i might throw up or pass out.
Know one seems to have any anwsers. The rhauematolgist, while very nice, hasnt really told me much other than my compliment level is low and it could mean somethings brewing. After 6 yrs im frustrated...and have kinda lost the drive to push the drs. to figure it out. I kno somethings wrong...its just a matter of getting on the right track. When they sent me for the lupus test at first i did some research and got quite excited. ( i kno it sounds bad..but sometimes i just wanna kno what it is regradless of what it is) Am i crazy? if not lupus then what?
I just read your post. Welcome to the forum. You will like it here. There are a lot of good people that come here.
My name is Kathleen. I have SLE and have had it for years, before I got diagnosed for it. Sometimes it takes a rather long time for it to be diagnosed. If I were you I would not let the doctors dismiss you without doing all the tests they can to figure out what is going on with you. I made the mistake of letting the doctors basically tell me it was all in my mind etc and it nearly costed me my life at the age of 36. I have had symptoms since the age of 7 years old. I unfortunately developed Dishydrotic Eczema at the age of 14 and for whatever reason the doctors would focus in on that and not listen to a word I had to say. They would not even test me for Lupus until the situation got desperate. I ended up with Myocarditis and could very well have died from it. I have been on medications since I was 36 and I am now 47 years old. Your symptoms sound like you could have SLE and Sjogrens. I also have Sjogrens big time. Marycain will be on shortly and she may have more answers for you. Hugs, Kathleen
Hello and welcome!
After reading your post, it sounds as though you have some type of auto-immune illness in progress. In case you're not familiar with the term, auto-immune illnesses are diseases or conditions called by a malfunction in the body's immune system, which causes it to start attacking healthy tissue and organs instead of foreign substances like bacteria. Doctors aren't sure what causes most of these illnesses, but they suspect a combination of genetic and environmental factors. Because about 75% of all autoimmune diseases occur in women about 9 times more often than they do in men, doctors believe there is also a hormonal link.
Autoimmune illnesses can be hard to recognize and diagnose because doctors still don't understand them very well, and the symptoms can often be mistaken for something else. There are over 80 different autoimmune illnesses, including connective tissue diseases like lupus, RA, and scleroderma; endocrine diseases like type I diabetes and graves disease; and neuromuscular diseases like MS and myasthenia gravis. Many of these diseases have things in common, like fatigue, and some of the symptoms can be mistaken for psychiatric illnesses like depression, bipolar disease, and eveb hypochondria - because there can be so many and varied symptoms, doctors often don't recognize they are part of a single disease process. To make it even more confusing, patients can have more than one autoimmune disease, so it isn't unusual for someone with lupus to also have sjogrens and reynauds - doctor call this an "overlap syndrome".
Finding a doctor to diagnose and treat an autoimmune disease can be challengiing. Although most lupus patients eventually end up with a rheumatologist, you have to remember that a rheumatologist specializes in arthritis and related diseases that affect the bones and joints - they are not specialists in auto-immune illness and may not be familiar with certain auto-immune conditions. There are some clinical immunologists in private practice but most work in hospitals.
If you have an illness that your doctors can't easily diagnose, it may help to ask for a referral to a teaching hospital or a major clinic like the Mayo Clinic or Cleveland Clinic where there are a number of specialists you can see at one time.
A lot of the symptoms you are describing sound like lupus, while the dry mouth and eyes sound like sjogrens syndrome, an autoimmune disease that attacks the tear ducts and salivary glands, and can cause other symptoms as well. There are some specific tests to diagnose sjogrens - you can ask your doctor about these. Sjogrens needs to be diagnosed right away because it can cause severe, rapid tooth decay, so you also need to discuss this with your dentist. You should also have your blood glucose tested because the severe hunger you are describing could be an indication of hypoglycemia, or low blood sugar. You can buy small glucose testing meters in most pharmacys - ask the nurse at your doctor's office to show you how to test your blood properly, and monitoring your blood sugar before and after meals will help figure out what's going on. If this severe hunger persists and you are losing weight, see your doctor again and make sure you are tested for throid disease and diabetes.
You mentioned that your complement levels are consistently low. The complement system is a group of proteins involved in immunological and inflammatory responses. There are 9 major components of complement labeled C1 through C9. Your doctor can test your levels of individual complement proteins, or your total complement activity (tests called ch50 or ch100). Patients with lupus often have low levels of c4 and c4 - other autoimmune diseases can cause low levels of other complements. A low total level could mean that you have a genetic complement deficiency, or that your body is using complement faster than it can replace it, which could indicate a disease process. A low complement level isn't dangerous, but does indicate that something is going on.
I wish I could tell you yes, you have lupus, but we aren't doctors and don't know. It definitely sounds like an autoimmune illness, and you need to talk to your doctors about further testing and possibly a referral to a larger hospital or teaching clinic.
You might alsi visit the American Auto-immune and Related Diseases Association for more information -www.aarda.org - I hope this info helps
Thanks for all the imformation and support. I am actually from canada...but my rheum. and my family doctor are both part of a major teaching hospital in toronto. I guess i just need to keep pushing... whats the best/tactful way to ask your doctor to do more/keep looking?
I'm not sure there is a best way - if you feel comfortable with this rheumie, you might talk to her about treating your symptoms and monitoring you until she is able to make a diagnosis. As long as your symptoms are being treated, an actual diagnosis may not be urgent. If she is not willing to treat your symmptoms, an open discussion about other options like a teaching hospital is a good idea. Just be careful not to put her on the defensive by implying she isn't capable - but do be calm and assertive about the problems you are having. Let her know that this is impacting your life and you really need to find out what's wrong.
=) mary is so smart. hehe..anyway!
wow..yes, i'd keep pushing for them to keep testing. it's not comfortable..but you should, as she says, make it very clear to your rheumy that it's really effecting you and you're conserned. if they brush you aside..you should really find someone that will listen. much love to you and i hope you find out soon. you are in my prayers.
Is it Lupus?
My rheumatologist said that an absolute dianosis of Lupus wasn't necessary to begin treatment. I had enough symptoms that it was clearly autoimminue related, some sort of connective tissue disease, and most likely SLE. There is that magic "4 of 11" of the diagnostic criteria that must be met for a clinical diagnosis, but it's my understanding that this criteria is primarily important if you're going to be a participant in a study of some kind. It may also come into play for insurance purposes, I expect. So, bottom line would seem to be that you need to press your doctor to treat the symptoms you have, and follow up with additional tests. I'm new to this, but I've learned from many sources that diagnosis can take a long, long time. It's just not logical (or safe!) to wait for that to begin treatment.