So only a couple of weeks ago I was celebrating a diagnosis that in fact seemed like it was quite reasonable. However, this was from the osteoporosis specialist in rheumatology (bones and joints) - and now I have seen an endocrinologist (hormones, blood chemistry and how the body reacts to stuff)!
Dr COx is a dream. ok so he is quite tall and good looking too, so that is a huge plus, but he is the first doctor to take such a full history, look at my tongue, pulse, reactions, backpain, skin condition, liver, kidneys - you name it he tested it! it was THE most reassuring medical interview of all. (and he spent 40 mins with me rather than the 10 or 15 I got in diagnosis from the other 2!)
Now, as I mentioned before - Fogleman had said it was genetic, and not only that but when he wrote to me afterwards actually had the cheek to add that he thought I had been 'unlucky' with so many breaks and perhaps accident prone, and had no idea why I ahd had so many breaks and that it was unheard of in his experience!!!. So he dropped about 10 miles into the depths of the earth in my opinion. NO NORMAL PERSON breaks from a hug for gods sake!that is not just unlucky! thats a major problem in my opinion! SO the temporary excitment of a couple of weeks ago had descimated into no mans land of somewhat disgruntlement.
But, then I have a final appointment this year with Dr COX. After a VERY long wait to see him, he reviewed all my previous tests and as I said, looked in to all the other aspects of what might actually be CAUSING this problem and not just dismissed it as bad luck or unfortunate or even just low bone density all along.
SO what was the outcome!?
Where he did agree is that the depo provera is a likely catalyst for me in decreasing my bone density so rapidly. he also siad their is a small chance that I might have had low bone density all along, but given how robust I ahve been until more recently, with a lot of sports, adventures and exercise that he feels that is more unlikely. He is looking at the hormones, the blood quality, urine, the overall chemistry of how the body reacts to drugs, food, illness, stress, you name it, basically how the body is changing in these conditions.
He feels the long period of stress in my life over the past 10 years has been a factor, the depo is a factor, but he was VERY concerned about the bruising I have suffered all my life (not normal at all apparently!) the migraines are a factor, and previous breaks and illnesses such as obshgood schlater disease I got when I was growing (in my knees) are all indicators of something else going wrong in my body! It is a great comfort to me that this man actually wants to understand WHY and not just diagnose me with a problem and then brush me off!
He also agrees that there is no current relevent drug that will help me - all the biphosphenates are horrid as mentioned before,and he says would be far too disruptive to my body in the immediate term, especially if I still want kids at any point in the next few years. the only option, should I continue to suffer breakages is to take a hyper parathyriod drug that helps increase bone density rapidly, but that I should have in high levels and only for a short time. but he said it would make me feel ill due to the dose levels - there is always a trade off I guess. He does believe that my bone levels are significantly low to be greatly concerned and that I should be very careful and even expect more breaks - so perhaps skiing is not such a great idea just yet.
Finally he does believe that now Im off the depo and that my cycle has returened that my body will start to regenerate some of my bone density on its own. Basically the depo shuts down the production of oestrogen, and s bone loss is caused by the calcuim being pulled from the bones to suport the hormone system in the meantime. With the return of oestrogen (and much to alls surprise - a significant increase in bra size!) my body can then focus on keeping the calcuim in my bones and even restoring it to more normal levels. by contiuning to take the K, magnesium and calcium this will be encouraged further. so 2 glasses of milk to be drunk a day and continue with my suplements and the Vitamin d now to be taken every 2 weeks instead.
In january I have to have a spine xray - he is concenred that the damage in my back is in fact due to fractures there too, so best to rule it out if possible. that would certainly explain an awful lot f the back pain I have had over the years!
I have to do 2 days of urine collection and tests, with a number of steroid and blood tests to test my bodies' reaction to various things and how it combats or not certain things like changing hormones.
It means January and the new year will be starting with a whole new round of hospital visits, needles and machines, as well as hours more in waiting rooms and so forth, but it is encouraging that this doctor really wants to know what is going on.
SO a final step towards actually finding out how in 18 months a person can endure 21 fractures and breaks in their ribs (and possibly now my spine too!)
onwards.........................................
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