Do I really have Lupus?
I have been to many Doctors and had tons of tests and was finally diagnosed with a Lupus variant that my Doctor said affects my Connective Tissue. My blood tests do not test positive (ANA) so the other doctors would not give me a diagnosis. The current doc says because of my fevers, blood in the urine and sun sensitivity, which is only on my eyelids and under my eyes, I have it and it can take years for it to show in my blood. He put me straight on to Imuran and an antidepressant due to my severe symptoms. I feel like I have the flu and can barely get out of bed. I am so confused. One doc thought I had Fibromyalgia but then said I did not hurt in the right places. I have started falling a lot, am having trouble with my vision, ache all over, have joint pain, have days where I have trouble getting my breath and nausea, gained a ton of weight, the list goes on and on. I tried going back to work but ended up with a fever and back in bed. I feel like I have lost my life and although the Imuran helped at first I don't feel I am getting better. Any suggestions? I also want to say thanks to whoever started this site. I have been reading some of the posts and see others who struggle. It is a good place to come and vent and get answers. I don't feel so alone anymore!
hi tammy,im fairly new here myself,and about as far from a dr as you can get, just the word lupus means variance, you probally wont find two people with exactly the same symptoms, but there are alot of people in here with alot of experience, I gain knowledge every day about this disease in here! I think one of the main problems that everyone in here is trying to keep in the right state of mind, i know i have a problem with this(my wife tells me so) :lol: just talking to other people in this forum has helped, with that said welcome,
p.s. check out lauries lounge(minions of the devil) post, it might make you smile
Fair Oaks California
Thanks for the reply. I'll keep reading. I guess I question the diagnosis because of the blood tests. Nice to meet you!
My hubby thinks I'm so moody and a little crazy because I'm a female. Whatever!
tammy, I know how frustrating things can be, it seemed like forever before I got a firm diagnosis for lupus. Don't let it get you down, we are all here to support one another when we hit the rough patches. You are in my thoughts and prayers
Tammy, I'm concerned by the falling and the vision problems you are having. Lupus and other connective tissue diseases can affect the brain and the nervous system, and sometimes, they can be mistaken for other illnesses. If you have not already been evaluated by a neurologist, I would really urge you to ask for a referral. It's important to make sure lupus has not affected your nervous system, because that may need more aggressive treatment than imuran. Please go back to your doctor and discuss your symptoms, and ask for a referral to a neurologist.
Will you explain how lupus affects the nervous system? I have wondered about this for some time and would love to hear your input. You seem so knowledgable about these things. Some things that bother me sometimes may or may not be lupus. Thanks in advance!
Lupus can affect the nervous system in several ways. It's important to understand that "nervous system" includes the central nervous system (the brain and the spinal cord) and the peripheral nervous system (the nerves that connect the brain and spinal cord to the rest of the body). The peripheral nervous system has both sensory nerves (that provide input from the body to the central nervous system) and motor nerves (that carry signals from the central nervous system to the muscles and glands). It's an incredibly complex system that depends on precision to work correctly.
Lupus can affect either the CNS, the PNS, or both. There are a variety of things that can happen. Lupus can cause inflammation of the nerves themselves (neuritis), or inflammation of the blood vessels that supply the nevous system (vasculitis). Inflammation can attack the grey or white matter of the brain itself. It can also affect the blood's ability to clot normally, causing either abnormal clotting or abnormal bleeding within the brain. Either can be catastrophic. Lupus can affect the glands that produce neurotransmitters, which are needed for normal brain function. It can also attack the protective coating that protects the nerves, causing disruptions in the electrical signals that pass through the nerves. This can results in seizures, tremors, pain, and loss of sensation, or abnormal sensation. This isn't an inclusive list, but just examples of the various ways lupus can affect the nervous system.
Nervous system involvement can be hard to diagnose, because it isn't always something dramatic like a seizure or a psychotic episode (although those do happen). Symptoms of nervous system involvement can range from subtle things like "brain fog", difficulty concentrating, memory lapses, headaches, or depression, to very noticeable loss of coordination, weakness in arms or legs, jerks or tremors, or burning pain that is often worse at night (neuropathy). Seizures and psychosis are the two neurological criteria listed in the ACR diagnostic criteria, but most rheumatolgists and neurologists agree that they are not the only symptoms of neuro involvement.
A neurologist or a neuro-psychiatrist is usually the best person to diagnose neurological involvement in lupus. Testing can range from MRI/MRA, angiography and other invasive tests, to pen and paper tests to measure concentration and cognitive ability - the testing to a great degree depends on the symptoms. Even "emotional" symptoms like depression, anger or intense anxiety may actually be indicators of neurological involvement. So if you have any questions or concerns about symptoms that may be neurological, please check with your doctor, and push for a referral to a specialist if you think it is indicated.
Thank you Marycain,
Lupus is sooo confusing...it is so comforting to have you and all the others that are so well informed to provide information and advice and kind words. I really like coming to this board to visit with everyone even if just to read what others are going through.
I feel like I learn something new everyday! Thanks to all who really care.