What is Lupus
Systemic lupus erythematosus (SLE or lupus) is a chronic, potentially debilitating or fatal autoimmune disease in which the immune system attacks the body's cells and tissue, resul...
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My tests in the past have come up negative as far as Lupus is concerned, but I am having more and more symptoms, and I don't know what's going on. I feel like I'm going crazy! On top of having joint pain every week, nausia, dizziness, tiredness, and what looks like red ugly achne across my cheeks and nose, I now have been having eye pains, headaches, very cold hands and feet, and my hands keep getting very tingly, like when they fall asleep. The tingly problem only seems to happen when I'm sleeping at night, it wakes me up disturbing my sleep. I'm scared the doctor is going to think I'm crazy. I feel so lost, and so frustrated, because I know something is wrong with me, but I can't seem to find out what it is. My Aunt and cousin both had Lupus, but since they have passed away, I don't know how they were able to get the diagnosis, if that is possibly what's wrong with me, I don't know I feel like I'm going nuts!
Can anyone out there give me any suggestions on what test I should ask the doctor to do? Can eye pain, headaches, extreme cold hands, and feet, be connected with possibly Lupus or an Auto Immune Disease? Does anyone have anything similar to what I'm going through? Posted on 10/22/09, 03:10 pm |
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Thank you so much for your reply. I'm sorry it has taken me a bit to get back to you. I don't have a pc. right now, so I have to wait till the library is open, to come on here. Otherwise my phone I can only read comments, it's too hard to post from it. 
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when i wasn't getting answers in my town I traveled 5 hours to the lupus center of excellence where they sit with you for at least an hour (my first visit he sat with me for an hour and a half) they run a million blood tests and their testing blood lab is very sensitive... If you are close to PA I really recommend going there for some answers...
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Thank you for your reply. I live in California, but if I can't get my diagnosis that I need, my husband, and I will consider moving somewhere where we can get the diagnosis, especially because my symptoms are getting worse.
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Hi,
The members here have given you some great advice. I just want to add not to give up, continue to seek a diagnosis. It may take a ton of doctors but it is possible to find the right doctor that will help you! One of the best things you can do (as someone already said) keep a journal! I have been diagnosed for almost 13 years now and I still keep a journal and take it with me to all my doctors appointments. Lupus and AI diseases in general are so difficult to treat because of our bizzare issues a journal is a wonderful tool to ensure the doctor sees a trend to what your are telling them is happening. Many of us also deal with memory issues due to our disease and inflammation so writing things down helps us to ensure we remember the important things we need to discuss with the doctor. Best of luck to you on your journey to a diagnosis. Please feel free to ask us any questions you may have. We can probably help you a lot more if you let us know what tests you have already had and what types of doctors you have already seen. Hugs. Melissa
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don't let doctors make you feel like you are crazy. you need to be your own health advocate. find a rhuemmy who will do the proper testing and think outside the box. looking at your symptoms alone should send off alarms with a good rhyummy. also a good neurologist, basically they are part of your treatment arsenal so you will need them both. I was diagnoised with mixed connective tissue disease, lupus, scerlederma, polymyositis, and raynauds after 7 years of thinking I was nuts. 22 doctors later I went to university doctors and they seem to see this more often. I was able to get the help I needed. The damage is done to my body granted, but now when I have an issue my doctors treat the symptoms with intellect, not passive patronizing.good luck in your quest. hope this helps.
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Thank you for your reply. Sorry it takes me a little long to reply back, but I have to go to my local library to go on the internet, till I get a pc again. Anyhow, it's so nice to hear that I'm not alone in my battle of getting my dianosis, and I'm taking your advice, I'm not going to let the doctors get away with making me feel like I'm crazy. I have no doubt that I'm sick. A person knows when something isn't right, and I haven't been right for awhile now. You would think my rash on my face would be a big alert, but these doctors want numbers, not actual things you can see. :
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