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Date: 27.07.2009
From: Sandie

Subject: Bone Scan/Vitamin D Blood Test

Hi all,

Well I had my bone scan last week and two days later I had a call asking me to go for a vitamin D blood test tomorrow. I am just assuming this has come to light from the scan, but as usual no one can tell me anything. Will go for bloods tomorrow but it will be the practice nurse and she won't know anything either. So I am thinking maybe it is not arthritis!! Right now I am confused. Does anyone know about vitamin D blood tests??? Oh well, at least they are now doing something.
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Date: 27.07.2009
From: val h

Subject: Re: Bone Scan/Vitamin D Blood Test

hi sandie can not help u but wish u well hope u get sorted soon val
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Date: 28.07.2009
From: Jill

Subject: Re: Bone Scan/Vitamin D Blood Test

Hi sandie, im assuming u went for the bone scan to check for Bone Density ? maybe they have found perhaps thinning somewhere? and want to double check your bloods for Vit D... it kinda makes sense to me sweetie, so dont worrry, and u will get those results soon...hope u have made that appt for the results btw...often when we see a consultant and they ask for an mri...as soon as I get the Mri appt, I then make an appt for the results a week later, that way u dont get shoved to the back waiting for your results...hope that makes sense...... take care

Jill x
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Date: 31.07.2009
From: Ryan Day

Subject: Re: Bone Scan/Vitamin D Blood Test

Hi Sandie,

My partner who goes on this forum just showed me your post and said i might be able to offer some assistance.I may be able to throw a little light on your Vit D Bloods etc so hope it helps . I am registered disabled due to a rare and crippling bone,nerve and kidney disease, I have a major Vit D defficiency connected with my kidneys which has basically softened by bones to crumbling status and very weak from pelvis through to my feet. I have had numerous bone density scans,Dexa scans,MRI,CAT scans and bloodwork along with Vit D injections.

I don,t want to worry you but it sounds like you could have a bone problem like me but again don,t worry until it,s confirmed. The problem with me is i have a kidney disease called " Hyperphosphataemia " which means my kidneys are constantly leaking the phosphate and nutrients which make healthy bones, This has led to weakened bones called " Osteo-Malacia " and is the adult equivalent of a child with " Rickets ",
On top of that i have a nerve disease called " Osteo-NerveDystorphy which is a lot of pins and needles,Cramp and muscle tightness in the legs. Make sure you get treated soon and ask lots of questions as previous doctors and specialists missed my diagnosis as it was so rare.

I am now taking lots of calcium and phosphate medicines aswell as a Morphine patch to counter the extreme pain of 800+ fractures in my hips/pelvis/legs and feet.
I use crutches permanantly and it has changed my life completely. I started off with blood tests and X rays but as my feet were twisting outwards( Since birth but it went without treatment for years as my parents refused to acknowledge i had a problem ) they went for Bone scans etc.

I have been told a cure is a kidney transplant but they are refusing to do this as apparently i,m too young and it,s too exspensive !!! I have been treated pretty poorly by the NHS as my specialist even said to me one appointment " Your treatment is costing us rather a lot of money " I,d never wish these diseases on anyone as it,s agony daily and it completely stops your everyday routine.

I wish you luck anyway and hope i,ve not scared you too much. Please let me know how you get on and i hope this is of some help to you. Sorry also for waffling on but it,s such a complex issue. Best wishes, Ryan
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Date: 31.07.2009
From: Lynne

Subject: Re: Bone Scan/Vitamin D Blood Test

Hi Ryan I don't suffer my self with that particular prob got RA but it was very infofmative of you to give us an insight into other possible treatments. Thank you for that I'm so sorry you have not had the treatment you obviosly deserve. Sadly that's an all to familiar story on here. We nearly all have experienced a lack of treatment and/diagnosis. It does feel like a constant battle to get the treatment we need. Take care and thanks for the post . Xxx
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Date: 31.07.2009
From: Sandie

Subject: Re: Bone Scan/Vitamin D Blood Test

Hi Ryan,

Thank you very much for all that very useful information. I am so sorry you have been suffering that pain for such a long time. I have not heard anything back after the blood test on Thursday, so watch this space

I hope that one day in the not too distant future you will be offered a kidney transplant which sounds like it is the only thing that could give you a better quality of life.

The others on this web site are very supportive, so you should come on now and then and join in some of the discussions.

Thanks again for your helpful reply.
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Date: 01.08.2009
From: Jill

Subject: Re: Bone Scan/Vitamin D Blood Test

(((((hugs for u Ryan)))) U have been thru so much....U deserve the treatment, sod wot that doc told u, hope he sleeeps at night....mind u, i was told by a physio once that i was a drain on the NHS becos she cldnt actually repair my problems LOLOL.... mind u that was nowt compared to what u were told....take it easy ok....u say your partner comes in here, can U name her? its goood to hear from a fellla, as much as I love our gals in here, its important guys pop in also....take care

JIll x
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Date: 03.08.2009
From: Elaine

Subject: Re: Bone Scan/Vitamin D Blood Test

Hi Sandie
I am presuming it is a bone density (DEXA)Scan you've have had.
We need vitamin D3 for our bodies to absorb calcium. If we are deficent in this vitamin it is possible to have low bone density if the body is not getting the calcium it needs.
The Vit D test may just be routine along with the scan. I recently had a DEXA scan but I had a calcium blood test about 6 months before and maybe Vit D was included in that...I don't really know. My bloods were normal but I was diagnosed with Osteoporosis last month. I had several of the risk factors so the result wasn't really a shock and I'm just starting medication.
Take Care
Elaine
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Date: 03.08.2009
From: Sandie

Subject: Re: Bone Scan/Vitamin D Blood Test

Hi Elaine,

Thank you for your reply. I had my result today and bone scan showed no abnormalities, which is a relief. Still waiting for Vit D test results. Hopefully as you say it's just routine. Sorry to hear you have been diagnosed with osteoporosis, I do hope the medication controls it. No one seems to know what is wrong with me so I will just keep bugging them 'till someone "stumbles" on something!!
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