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This Forum is for patients who suffer from Loin Pain Haematuria Syndrome, their supporters and friends. We also include those who also have IGA and IGM as they are closely connected.
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Title: Radio Isotope scan
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Alison Banister
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(Date Posted:07/03/2006 13:37:51)

Has anyone had a radio isotope scan? My specialist is offering me one.Alison

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Alison

Kim Hughes
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(Date Posted:22/03/2006 14:54:18)

Reply to : Alison Banister
Has anyone had a radio isotope scan? My specialist is offering me one.Alison

Hi Alison,

In the USA these are called nuclear scans.  I have had a couple back in the early 1990s.  The procedure itself is not bad.  They inject you with a radio-active isotope that highlights the kidneys (or whatever organ they are wanting to see).  I don't remember feeling anything funny from the isotope (like the warm, sometimes nauseating feeling you get when injected with IVP dye).  It seems to me that hardest part was lying still for a long period of time.

When I had the scans done I only had LPHS in my left kidney.  There was considerable uptake of the isotope by my left kidney and the doctors thought it notable that after my autotransplant (of my left kidney) a second scan of my left kidney revealed it "lit up like a Christmas tree" indicating whatever was causing my pain (or the LPHS) was still very active.  In the first scan (pre-autotransplant) my right kidney did not uptake the isotope but the scan after the auto showed the right kidney having some uptake of the isotope.  I eventually developed LPHS on the right side, too.

It is my understanding that LPHS cannot be diagnosed with a nuclear scan.  It can show that something is wrong but is more likely to be used to look for tumors or structural abnormalities.  Even though mine showed considerable uptake of the isotope, it was evenly spread throughout my kidney and did not reveal a tumor or the like.

As far as tests go it is not difficult or painful except for lying still for a long period...if that causes you problems.  Ask your doctors what they hope to find out then you can better decide if you want to go through with it.  If you can afford to pay for it (or have insurance, etc.) I would go through with it.  It may indicate something other than LPHS as a cause for your pain and that might be a good thing since they may be able to "fix" it!

Good Luck,

Kim
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Alison Banister
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(Date Posted:22/03/2006 15:37:01)

Dear Kim,

The specialist has now decided to do a lying & standing IVP to see if my kidneys move too much when I stand up.  If this is the case it can be fixed with a small operation.  In the mean time I continue to seek healing for myself.  I'm reading a book 'why people don't heal and what they can do about it.'

 

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Alison

Kim Hughes
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(Date Posted:27/03/2006 04:31:25)

Reply to : Alison Banister
Dear Kim,The specialist has now decided to do a lying & standing IVP to see if my kidneys move too much when I stand up. If this is the case it can be fixed with a small operation. In the mean time I continue to seek healing for myself. I'm reading a book 'why people don't heal and what they can do about it.'

 

Hi Alison,

Somewhere I read that there can be significant findings on an IVP film when taken while the patient is standing up.  In the USA the practice of taking a standing film is rarely done.  It seems silly that they don't do it any more as a standing film would be more likely to show swelling in the ureters or calyces because gravity is working against you.  I tried looking through out database to find the paper but for some reason I could not access any of the database.  I do remember that the paper was authored by a doctor in Saudi Arabia so if you ever get access to the database or are looking through other information there aren't too many papers about kidney disease authored by Saudi doctors so it should be easy to spot.

Good luck with the IVP and I hope they can find something other than LPHS as a cause for your pain.

Kim 
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Alison Banister
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(Date Posted:27/03/2006 09:19:30)

Reply to : Kim Hughes
Reply to : Alison BanisterDear Kim,The specialist has now decided to do a lying & standing IVP to see if my kidneys move too much when I stand up. If this is the case it can be fixed with a small operation. In the mean time I continue to seek healing for myself. I'm reading a book 'why people don't heal and what they can do about it.'Hi Alison,Somewhere I read that there can be significant findings on an IVP film when taken while the patient is standing up. In the USA the practice of taking a standing film is rarely done. It seems silly that they don't do it any more as a standing film would be more likely to show swelling in the ureters or calyces because gravity is workingagainst you. I tried looking through out dat

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Alison

Alison Banister
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(Date Posted:27/03/2006 09:36:05)

Dear Kim,

Thanks for doing that for me.  However I may not be needing it!  I am reading a book called 'Your body speaks your mind' by Debbie Shapiro.  It is absolutely incredible & I am working towards healing.  Apparently every thought, every feeling we ever have goes to our hypothalamus & is turned into a physical reaction.  Chemicals & hormones relating to those thoughts & feelings then travel to every cell in our body, causing dis-ease.  The kidneys are where anxiety, frustration & relationship issues are stored.  Debbie tells of ways to heal ourselves from even so called incurable dis-ease.

I am also reading a book called 'Why some people don't get better and what you can do about it'.

It takes time to learn a new way of thinking but I am getting there & sincerely hope that others who read this may consider reading the books.  However a lot of people believe that they will not get well as they have been told that they won't & that pattern of thinking needs to be broken in order to start to heal.  Other people can't imagine a life without illness & still others gain in some way by being ill.  All of those issues have to be challenged & then where intention goes our bodies will follow.

Very best wishes from Alison

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Alison

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