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Member
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Join Date: Jan 2015
Location: IL
Posts: 279
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Member
Join Date: Jan 2015
Location: IL
Posts: 279
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Quote:
Originally Posted by Littlepaw
Hi AB,
Don't get ahead of yourself on the panic. You don't yet know what you're dealing with and you can drive yourself mad with the "when,why,how timeline". I made myself crazy trying to figure out how this happened to me, micro analyzing everything, as if identifying an exact mechanism would negate the fact that I have to deal with the outcome.
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Not sure I'm in full panic, just making sure bases are covered. It's been a bad (or good, depending) habit since my son's 1st heart surgery...kind of a protective mechanism 
Quote:
Originally Posted by Littlepaw
Try to deal with not knowing and not with a diagnosis you don't have yet. Is your blood calcium elevated? That might provide a further clue on hypercalcemia from leaching. The low D is no surprise, it is quite common. Yes yours is very low but that's not unheard of. Mine was low on a multivitamin AND living in Texas. Hard not to get enough sun here and I do spend time outside regularly! Your levels should come up in a few weeks. Low D impacts chronic pain and nerve health so I actually see some hope in here. And on the osteo, it sounds like you are now a candidate for biphosphinate. If you can't get any infusions covered you could look at alendronate (fosamax). It has shown good results in CRPS bone pain and is oral and available generic from Canada if too expensive here. You might get rid of some your ache treating the bone issues.
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Not sure about Ca level, as she didn't state. She said doc wanted to start me on 50,000iu Vit D twice/week and refer to endocrinology. That referral is what prompted the intense research into the endocrine/vit D deficiency scenarios. Unfortunately, the *possible* hyperthyroidism in & of itself is not responsive to biphosphinate/alendronate. The offending parathyroid gland(s) need to be removed. Thereupon, the cure, as bone density returns (slowly), vit D levels rise and ... ta da!
I certainly appreciate the connection to my pain levels (see? I'm talkative but not crazy gone!). I think my daughter's BF appreciates the connection as well. Since he lead on my RSD was "self-diagnosed" (to which I responded with "Actually, medically diagnosed & documented in my chart, tyvm." After reading my patient summary and learning of the results of everything else, he has gone into "nursing mode" and become quite compassionate and helpful. The things black and white can do...
Quote:
Originally Posted by Littlepaw
IF you do have something needing a procedure, the parathyroid surgery is not super long so that's a good thing. Neurontin 900mg pre-op is good for heading off chronic pain and minocycline is the best post-op antibiotic, it attenuates glia activity. My plastics nerve guy basically gives it to all his patients no matter type of procedure he is doing whether it is nerve repair or DIEP breast reconstruction.
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Thank you for this! Now I can make sure this is discussed with my medical team to be ordered and charted!
Quote:
Originally Posted by Littlepaw
Don't give up girlfriend! You may get something outta this. Like I said there is some weird kind of hope in here, at least some things that are treatable and may improve your overall situation.
Sending today's Healing Love, 
Littlepaw |
 Indeed! While I was conflicted with the MRI results (sure FEELS like more than what was discovered), knowing I could push my boundaries without causing damage gave me some courage/motivation to rehab! This new biznotch, while has me a bit nervous, explains a little at this point and will explain a lot when the rest of the tests are in & diagnosis is confirmed. Direction = peace!
Thank you LP for your continued support and
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Believe in the Strength of Faith and Hope, within there is Peace and Love...Always ~pe
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