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Topic: Paget's Disease-MRI/CAT results..... (Read 991 times) |
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Little Deb
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Paget's Disease-MRI/CAT results.....
« on: Dec 23rd, 2003, 11:35pm » |
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Anyone ever been diagnosed with this after a MRI and CAT of the head???? They said that the frontal bone on the left side of my head was "thickened". I have CH on the left. No suprise to me that I am thick headed!!LOL
Anyway, they said it was "probable" Paget's Disease and are sending me to a bone specialist at Duke University.
Just wondering if any other clusterheads had been told such a thing. My neuro told me that if it came back positive for Paget's that she was treating me all wrong( with the Zomig, Imitrex, Procardia, steroids, yada yada).
As I am sure you would all agree, ok, maybe there is Paget's, but that doesn't change the cluster headaches. It isn't related, and there is no question what kind of headaches I have.
Any info would be appreciated.
Thanks!
thick headed but......little deb!! LOL! 
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DJ
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Re: Paget's Disease-MRI/CAT results.....
« Reply #1 on: Dec 24th, 2003, 9:07am » |
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Deb, I haven't heard of Paget's disease, but I hope they can get something figured out for you!
on Dec 23rd, 2003, 11:35pm, Little Deb wrote:| As I am sure you would all agree, ok, maybe there is Paget's, but that doesn't change the cluster headaches. It isn't related, and there is no question what kind of headaches I have. |
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You certainly won't hear anything me me questioning your headaches. There was no question what kind of headaches I had either. Do I believe CH can be a symptom of some other, underlying condition... youbetcha!
Hope all goes well with you!
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ClusterChuck
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Re: Paget's Disease-MRI/CAT results.....
« Reply #2 on: Dec 24th, 2003, 11:03am » |
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on Dec 23rd, 2003, 11:35pm, Little Deb wrote:| No suprise to me that I am thick headed!! |
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No surprise here either ... 
Must be what your problem is ... As we all know, WDGCH!
Luv ya, Dear!
Chuck
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CJohnson
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Re: Paget's Disease-MRI/CAT results.....
« Reply #3 on: Dec 24th, 2003, 11:39am » |
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Calcitonin can relieve the progession of Paget's disease by inhibiting osteoclast activity. Calcitonin is produced by neural crest-derived parafollicular cells within the thyroid. There must be other sources though, as total thyroidectomy does not abolish the hormone.
Interestingly, a single RNA transcript is processed in parafollicular cells to calcitonin mRNA, but in nerve cells is processed into mRNA encoding calcitonin gene related peptide. The activity of CGRP is well known and documented as a key aspect of the CH process.
It could be that any number of conditions are capable of stimulating the trigeminovascular nociceptor activity that we call CH.
PFDANs
-Curtis
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Tiannia
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Re: Paget's Disease-MRI/CAT results.....
« Reply #4 on: Dec 24th, 2003, 12:29pm » |
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Deb -
I hope they get it figured out for you.
Curtis - I might just be brain dead from the hits that I have taken the last couple of days, but I did not understand a damn thing you said. I felt like I was back in a lecture hall in College all over again, taking that one class that I did not give a crap about but HAD to pass to fulfill my prerequisits. 
Tia
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| « Last Edit: Dec 24th, 2003, 12:29pm by Tiannia » |
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CJohnson
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Re: Paget's Disease-MRI/CAT results.....
« Reply #5 on: Dec 24th, 2003, 1:09pm » |
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WILD SPECULATION TO SUGGEST A POSSIBLE LINK BETWEEN PAGET'S DISEASE AND CLUSTER HEADACHES
Calcitonin helps against Pagets. The more calcitonin the less severe the Pagets.
Calcitonin is a hormone produced naturally by certain cells (parafollicular or c-cells) of the thyroid and probably elsewhere, as well.
Information from your genes tells those c-cells how and when to produce calcitonin.
The same information from your genes tells nerve cells how and when to produce calcitonin gene related peptide.
CGRP is elevated during a cluster attack and returned to normal when you take imitrex or when it just stops on its own.
It is conceivable that a persons body somehow detects the Pagets, or symptoms thereof, and acts to stimulate the c-cells of the thyroid to increase calcitonin output.
This could somehow trigger sympathetic (related in some way) nerve cells to increase CGRP output.
If some other factors are present, this could activate the trigeminal nerve in such a way as to trigger an attack.
PFDANs
-Curtis
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Ree
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Re: Paget's Disease-MRI/CAT results.....
« Reply #6 on: Dec 24th, 2003, 1:27pm » |
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my husbands Grandmother and Mother have Pagets disease.... be in touch after Christmas and I will let you know what I know... love to you Merry Christmas Ree
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jonny
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Re: Paget's Disease-MRI/CAT results.....
« Reply #7 on: Dec 24th, 2003, 4:32pm » |
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Oh ya!!, Ive heard the thick bone thingy. (Get your mind out of the gutter)
First Doc I saw was a GP and I think it was through Xrays that he told me that I had a sinus inffection........Next stop was a Neuro (The dude that diagnosed me) and he laughed at the sinus diagnosis seeing that I had been suffering the HA's for so many years. After an MRI he said what the GP was seeing was an extra thick bone in the front of my head....I guess on the Xray it appears as cloudy.
To my recolection he never mention that thing your talking about Deb (Thats something I would remember)
Ill be seeing him soon and will ask "What up with this"
....................................jonny
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Woobie
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Re: Paget's Disease-MRI/CAT results.....
« Reply #8 on: Dec 24th, 2003, 6:29pm » |
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I'm probably confused.............so dont mind me....
But I remember when Ramon was having his cycle a couple years ago - before he was diagnosed.... they took X-rays - and told him he had a sinus infection too. They said he had an inflamed nerve in his sinus. The next two cycles = also "inflamed nerve in the sinus". so he got the antibiotics and vicodin - as usual.
When he was diagnosed CORRECTLY - I asked the Dr. ( a different Dr) about the "inflamed nerve". he said that the headache is not from the inflamed nerve....but rather, the headache CAUSED the nerve to get inflamed, and that is why so many get misdiagnosed - because the nerve is in the sinus.
They never said he had a thick skull. He's had X-rays and MRIs and all that - so if he did - i'm sure they'd tell him - right?? if there are more people that say that they have this skulls... maybe we should ask for another Xray??
what is all that mumbo jumbo that CJohnson posted?? I dont understand all that lingo.
i know nothing
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Little Deb
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Re: Paget's Disease-MRI/CAT results.....
« Reply #9 on: Dec 24th, 2003, 8:05pm » |
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Well, I'm with y'all. Didn't completely understand Curtis either. The second post was a little more clear.....but, maybe a picture would help!!LOL!
Thanks, Chuck..love ya too!
jonny, you have a "thick" head on top too???OMG!!!LOL!!
shuttin' up and waiting for a picture....little deb
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