Happyfeet, it took me almost 3 years to get a diagnosis and it took the third rheumy I saw to make a diagnosis. The second rheumy I saw was alright and she kept saying I had something "lupusy" but she wouldn't go ahead and give me anything more than plaquenil (which worked great at first) as I got sicker and sicker. I was so sick by the time I saw my 3rd rheumy I could hardly walk because of the pain. He basically looked at me and the list of symptoms I had and diagnosed me that day and put me on prednisone which has been a huge help, but I hate the side effects. Prednisone is the one med that has helped me the most. I'm surprised with how much pain you are in that they haven't tried it for you yet. I have a big list of symptoms which include: joint pain with some swelling, fatigue, butterfly rash on face, sun sensitivity, mouth sores, hair loss, headaches, weakness, brain fog. I also have positive labs that include positive ANA, elevated sed rate, elevated CRP, protein in urine.
Other people might tell you different, but I wouldn't worry too much about
your diet right now - you have enough on your plate to deal with. Just try to eat as healthy as you can. People try to be helpful and I think one of the things that well meaning people think can help is some kind of special diet. There are people here who have said they have benefitted from a gluten free diet, but I haven't had the energy to try to figure out how to do that yet. Like I said, I think you've got enough other stuff going on right now that you don't need to worry too much about
your diet right now (others might disagree with me).
I'm sorry you have to go through a spinal tap today. I've never had one but they sound scary. I'm hoping the test goes okay for you.
Just don't give up - someone has to be able to figure out what is goin on with you sometime. I know how hard it is to wait and be in limbo when you feel so sick. I'm also sorry to hear about
your job. I finally had to quit my job after being there for over 9 years because I just got too sick. I am fortunate that my husband has a good job and we can make it on his salary. I don't want to go through the torture of filing for disability and the nightmare that it can be to try to get it, but it is always an option for you, especially with how severe your symptoms are. You usually get denied several times and have to appeal and then usually have to have a hearing.
My thoughts are with you today. Let us know how things went when you are feeling up to it.
Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily;
Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops
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