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Rant --- New Info for Me

Aug 28, 2015 7:58 PM

I'm beginning to wonder if I might have lupus, especially after finding out it's in my family. I've had the rash before, but I just figured my body was responding, or blushing but it seemed random. I didn't understand it at all, so I just hid my face and hoped no one noticed.
I've been tested for quite a few things, but so far only had diagnoses through differential diagnosis, so no 2 docs agree. CRPS/RSD fits my issues at their worst, but the "unknown injury" might have something to do with lupus. I was looking it up on pub med, and joint issues and chest pain were the 2 things that jumped out at me. I've had joint pain all my life, and in my right arm it seems to follow the vein.
My neurologist looked at me weird when I said that. I had created a full history of meds, diagnoses, docs, family diagnoses, but they were pretty much ignored.
He just said "in his experience" I did not have what looked like CRPS. I was in shock. Just because I'm an ill teenager, gives you no right to judge my research. Articles, wiki, blogs, various forums, pub med/ncbi. I read them all. He just shrugged me off.
His experience may reflect old views of RSD, but not current standards. Dude, you don't have a diagnosis better than that. All the other ones are also differential, so you're as good as guessing. You don't have this illness. You don't live the experience. I'm desperate to figure out what's wrong.
I started in the same places as my local neurologist: several different types of arthritis, fibro, carpal tunnel (Needed to disprove this one), neuropathies, MS, lupus. I learned how to describe my pain. I went from "I don't know. It just hurts all over." to "My leg is numb, my wrist is tingling up the vein, the other side is just burning, and everything else aches."
I know he expected respect, but when you ignore me, and cause pain, I can't. I just can't. I want to know what's wrong, but it has to make sense with the info. Simply saying "it's not that" and telling me to take a video of a flare with me explaining what is wrong (hahaha, in a flare I can't even think, let alone talk) and see you in 4 months. Thanks a lot!
Anyway, I'm hoping he'll listen when I ask about it. Rrgh.

Aug 31, 2015 10:38 AM

Ferretbandit, I'm sorry you experienced this. I actually had my hubby video my hand tremors, which was helpful to my docs. Is there a way your dad could video you? If you see the doc and he can't give you an answer, ask him to refer you to someone else, for a second opinion and a"new set of eyes. " And don't be afraid to ask for a female doc (more sympathetic to female patients, and less judgemental... Sorry guys, no disrespect meant), and a younger doc, who is up to date on new things. Hugs & prayers you'll get answers soon! 🙏🌼

Aug 31, 2015 10:57 AM

Ferretbandit, you are one tough cookie and I know you will get to the bottom of what's going on with you. I have been through that type of frustration of doctors looking at me cockeyed and telling me that I'm a "mystery". Well, I had to do a lot of reading and research for myself as well. The more informed I became about my body and what I was feeling, the better I could deal with the doctors. You know, a doctor should not just expect respect from you if he is not treating you in kind. I cannot be polite to doctors like that either. I hope you find the doctor that will listen and help you as opposed to guessing or giving you the "in my experience" line. You're right, THEY are not living it and experiencing your pain and one can only deal with just so much. You're in my thoughts and prayers and I'm sending you gentle hugs to help you get through your day. I will be following your posts for updates on what's happening.🌻🙏🏻

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