I went for a medical review just recently and happened to see a Dr I have not seen before. I thought it would be a quick in and out, but he really was very thorough. He then asked me about recent blood tests, so I told him that I have them regularly and the Rheumy had said all was fine and she was happy with all my bloods. I had been on a diet being careful what I was eating and my blood sugars, cholesterol etc were really good, and that's what I told the Dr. So he brought them up on the screen and said yes, all except your creatinine, it is consistent with stage 3 CKD. I said to him that I had a high reading awhile (2 years or more) ago brought it up with the Rheumatologist and I remember saying to her 'well in light of what you think is wrong with me shouldn't you be checking it' at which point they all scurried about to get my wee dipped for protein. I was told that was ok. But the Dr said no it has been consistent right across the board for 2 years!!
I am a bit upset about all this because I believe if you have the right info, there are things you can do to help yourself. Also the Dr said that I should be having my wee dipped regularly, I have only had it done once. I have to say I'm quite stunned at not being told this info. I used to get all my blood tests printed from the Dr but my surgery is in another village and now my prescriptions are just beamed through to my chemist so don't tend to go into my Drs very often.
I also have Trigeminal Neuralgia which I've had for awhile but didn't know what it was and questioned him about it as I was worried about flying. This has been rearing it's head again with my flares. I had it quite a lot when I was really ill, then once everything became stable not so often. Just recently it has been rearing up again and it is excruciating.
I still have no official diagnosis- I am down as Sero negative connective tissue disease and Chronic fatigue syndrome. I flare each month (!) with my menstral cycle which is actually every 3 weeks. I'm lucky if I'm well-ish for a week of that. But I have to say I am at a place now that I feel stable and this is as good as it's going to get, and I am grateful for that, because I can take care of my family. I did have a good 2 years of being completely incapacitated. It was a long black tunnel. I take 10mg steroids daily, Hydroxy and Neurontin.
I have all the symptoms of lupus, malar rash, temperatures, night sweats (not so bad atm) Ive had hair loss, and lost a lot of it and had patches missing, ulcers, mouth, nose, eyes, joint pain in most joints to the point where I feel broken and it hurts to breathe, I have neuro problems where my legs give out randomly, chronic fatigue, cognitive dysfunction, speech problems the muscles in my face drop - the list goes on and on. Thankfully I have always kept a diary else I wouldn't remember everything.
I still have no solid diagnosis as my bloods remain negative!!!!!
A lot of Lupies seem to get Trigeminal Neuralgia- I wonder about the connection.
Also, when a Dr is nice to you, takes his time, doesn't want to rush out the door and treat's you as a human being - that's quite a refreshing change isn't it?!
I just needed a bit of a rant really!
Well wishes to you all xx