advice on scans/ MRIs/ xray/ other diagnostic tools

[Guest guest]

Virginia,

Know that we will be thinking about you and Chris. I pray that the appointment goes well and that you can get some relief soon.

Veri & Jaye 13 poly

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[Guest guest]

Hi

By the way- it is really neat to see the way everyone on this list

supports each other in jra related things or life in general. It is a

very encouraging group!

I'd like to get some more advice from you all on diagnostic tools. Chris

has been off of Remicade now for a bit. His last infusion was Aug 28- so

about 10 weeks. He is in quite a bit of pain, but making it okay. He

gets pretty pale around the mouth and I can tell he's hurting. He is

still getting around okay. He limps to the tub first thing in the

morning and takes a hot bath. He hurts all over- but especially his

neck, back, knees, ankles, toes, and shoulders and sometimes hips. I've

been measuring some and he fluctuates some, but his left knee has grown

by 3/4 inch and his right big toe by 1 cm. These are very minute

changes.

Anyway- we are to see the dr the monday after thanksgiving and I'd like

to have some ideas of things to make sure that I don't forget. They'll

do some labs and hopefully repeat some that haven't been done in several

years, but I'm wondering if I should ask for some type of scan to see

what activity is going on. Initially, when he was first diagnosed, he

had an mri of his left knee that definitely showed that it was a " hot "

joint and that was a help in his diagnosis. Now, they are second

guessing his diagnosis of pauci- for which I am glad- but how do you go

about seeing what's happening all over? Is there such a thing? I'd also

like some testing or some recommendations for Ehler Danlos. He doesn't

fit the whole criteria- it's possible, I suppose to have both

hypermobility and jra. Anyway, I'd be happy for any recommendations from

you all.

Thanks

Virginia (11 (pauci))

[Guest guest]

Virginia, It sounds like has something beyond Pauci for certain. I am so sad for him and what he is going through (and of course for you as his mom having to see your son with all these joints effected...). I am not familiar with your story and was wondering why they stopped the Remicade? What do they have him on in the meantime while he waits for this next Rheumy appt.? There was a time when Isabelle had to have baths every morning too and it still saddens me to look back on that time of not knowing how to stop all her pain. That was a low point and my heart goes out to you ----- the not knowing when or how it will all get better, it can be so hard for us as moms to go through. If we could take their pain ourselves, we would. prayers, Hadley (Isabelle, 3 yrs. old, poly, MTX) P Woods <woodsrp@...> wrote: HiBy the way- it is really neat to see the way everyone on this listsupports each other in jra related things or life in general. It is avery encouraging group!I'd like to get some more advice from you all on diagnostic tools. Chrishas been off of Remicade now for a bit. His last infusion was Aug 28- soabout 10 weeks. He is in quite a bit of pain, but making it okay. Hegets pretty pale around the mouth and I can tell he's hurting. He isstill getting around okay. He limps to the tub first thing in themorning and takes a hot bath. He hurts all over- but

especially hisneck, back, knees, ankles, toes, and shoulders and sometimes hips. I'vebeen measuring some and he fluctuates some, but his left knee has grownby 3/4 inch and his right big toe by 1 cm. These are very minutechanges. Anyway- we are to see the dr the monday after thanksgiving and I'd liketo have some ideas of things to make sure that I don't forget. They'lldo some labs and hopefully repeat some that haven't been done in severalyears, but I'm wondering if I should ask for some type of scan to seewhat activity is going on. Initially, when he was first diagnosed, hehad an mri of his left knee that definitely showed that it was a "hot "joint and that was a help in his diagnosis. Now, they are secondguessing his diagnosis of pauci- for which I am glad- but how do you goabout seeing what's happening all over? Is there such a thing? I'd alsolike some testing or some recommendations for Ehler Danlos. He

doesn'tfit the whole criteria- it's possible, I suppose to have bothhypermobility and jra. Anyway, I'd be happy for any recommendations fromyou all.ThanksVirginia (11 (pauci))

[Guest guest]

Hi Hadley

He was diagnosed with pauci in Nov 03. Since he's been on naproxen, mtx, enbrel, remicade, arava, and ketoprofen, with a few short spells of prednisone. He's currently on arava and ketoprofen. (ketoprofen is an NSAID that he only has to take once a day and his stomach can handle and arava is a disease modifier like mtx, but his liver enzymes do okay with the arava and did not with the mtx). Some days he takes 3-4 warm/hot baths a day. It's starting to get cool here (kentucky) and I can tell a difference the days that it's cooler especially if it's rainy or right before a storm. We've found a place with a theraputic pool that keeps the pool at 90-92 degrees. He loves that and it helps temporarily. The ymca keeps their pool about 82 and it almost makes him feel worse to swim there. I've thought for a long time that he has some spondy type of arthritis, but he is HLA B27 negative. How do you get a definitive spondy or AS diagnosis?

Thanks for the prayers- the Lord is the only one that does know the future and he does have a perfect plan even in all this hardness!

Virginia

On Sat, 10 Nov 2007 10:27:09 -0800 (PST) Hadley Messner <hmessner@...> writes:

Virginia,

It sounds like has something beyond Pauci for certain. I am so sad for him and what he is going through (and of course for you as his mom having to see your son with all these joints effected...). I am not familiar with your story and was wondering why they stopped the Remicade? What do they have him on in the meantime while he waits for this next Rheumy appt.? There was a time when Isabelle had to have baths every morning too and it still saddens me to look back on that time of not knowing how to stop all her pain. That was a low point and my heart goes out to you ----- the not knowing when or how it will all get better, it can be so hard for us as moms to go through. If we could take their pain ourselves, we would.

prayers, Hadley (Isabelle, 3 yrs. old, poly, MTX) P Woods <woodsrp@...> wrote:

HiBy the way- it is really neat to see the way everyone on this listsupports each other in jra related things or life in general. It is avery encouraging group!I'd like to get some more advice from you all on diagnostic tools. Chrishas been off of Remicade now for a bit. His last infusion was Aug 28- soabout 10 weeks. He is in quite a bit of pain, but making it okay. Hegets pretty pale around the mouth and I can tell he's hurting. He isstill getting around okay. He limps to the tub first thing in themorning and takes a hot bath. He hurts all over- but especially hisneck, back, knees, ankles, toes, and shoulders and sometimes hips. I'vebeen measuring some and he fluctuates some, but his left knee has grownby 3/4 inch and his right big toe by 1 cm. These are very minutechanges. Anyway- we are to see the dr the monday after thanksgiving and I'd liketo have some ideas of things to make sure that I don't forget. They'lldo some labs and hopefully repeat some that haven't been done in severalyears, but I'm wondering if I should ask for some type of scan to seewhat activity is going on. Initially, when he was first diagnosed, hehad an mri of his left knee that definitely showed that it was a "hot "joint and that was a help in his diagnosis. Now, they are secondguessing his diagnosis of pauci- for which I am glad- but how do you goabout seeing what's happening all over? Is there such a thing? I'd alsolike some testing or some recommendations for Ehler Danlos. He doesn'tfit the whole criteria- it's possible, I suppose to have bothhypermobility and jra. Anyway, I'd be happy for any recommendations fromyou all.ThanksVirginia (11 (pauci))

[Guest guest]

Hi Virginia. Sorry to respond late –

I am trying to catch up on emails. Your son may have spondylitis which often

starts as a pauci diagnosis and as more things become involved (especially the

areas you mention), the dr may change to spondy. Your sounds a lot like mine.

There is no scan type test really, it is more the dr laying hands on and

feeling for the inflammation. My suggestion would be to check and see if your

son can touch his toes. Believe it or not, when my son began to have the pain

your son is, the dr performed a simple test where they measure how far his back

could bend. I had never noticed but could not touch his toes anymore, at

the age of 13! With the right meds and some physical therapy, he was able to

bend and run and walk without a limp. FYI – spondy (anklosing spondylitis

or spondyloarthropy) causes inflammation of the tendons primarily rather than

only in joints. That is why the pain can be in so many different places.

I hope your son gets some relief soon,

Michele ( 20, spondy)

From: [mailto: ] On Behalf Of P Woods

Sent: Saturday, November 10, 2007

11:54 AM

Subject: advice on scans/

MRIs/ xray/ other diagnostic tools

Hi

By the way- it is really neat to see the way everyone on this list

supports each other in jra related things or life in general. It is a

very encouraging group!

I'd like to get some more advice from you all on diagnostic tools. Chris

has been off of Remicade now for a bit. His last infusion was Aug 28- so

about 10 weeks. He is in quite a bit of pain, but making it okay. He

gets pretty pale around the mouth and I can tell he's hurting. He is

still getting around okay. He limps to the tub first thing in the

morning and takes a hot bath. He hurts all over- but especially his

neck, back, knees, ankles, toes, and shoulders and sometimes hips. I've

been measuring some and he fluctuates some, but his left knee has grown

by 3/4 inch and his right big toe by 1 cm. These are very minute

changes.

Anyway- we are to see the dr the monday after thanksgiving and I'd like

to have some ideas of things to make sure that I don't forget. They'll

do some labs and hopefully repeat some that haven't been done in several

years, but I'm wondering if I should ask for some type of scan to see

what activity is going on. Initially, when he was first diagnosed, he

had an mri of his left knee that definitely showed that it was a " hot

"

joint and that was a help in his diagnosis. Now, they are second

guessing his diagnosis of pauci- for which I am glad- but how do you go

about seeing what's happening all over? Is there such a thing? I'd also

like some testing or some recommendations for Ehler Danlos. He doesn't

fit the whole criteria- it's possible, I suppose to have both

hypermobility and jra. Anyway, I'd be happy for any recommendations from

you all.

Thanks

Virginia

(11 (pauci))

[Guest guest]

By the way, my son also HLAB-27 negative,

but definitely has AS.   Michele ( 20, spondy)

From: [mailto: ] On Behalf Of P Woods

Sent: Saturday, November 10, 2007

11:54 AM

Subject: advice on scans/

MRIs/ xray/ other diagnostic tools

Hi

By the way- it is really neat to see the way everyone on this list

supports each other in jra related things or life in general. It is a

very encouraging group!

I'd like to get some more advice from you all on diagnostic tools. Chris

has been off of Remicade now for a bit. His last infusion was Aug 28- so

about 10 weeks. He is in quite a bit of pain, but making it okay. He

gets pretty pale around the mouth and I can tell he's hurting. He is

still getting around okay. He limps to the tub first thing in the

morning and takes a hot bath. He hurts all over- but especially his

neck, back, knees, ankles, toes, and shoulders and sometimes hips. I've

been measuring some and he fluctuates some, but his left knee has grown

by 3/4 inch and his right big toe by 1 cm. These are very minute

changes.

Anyway- we are to see the dr the monday after thanksgiving and I'd like

to have some ideas of things to make sure that I don't forget. They'll

do some labs and hopefully repeat some that haven't been done in several

years, but I'm wondering if I should ask for some type of scan to see

what activity is going on. Initially, when he was first diagnosed, he

had an mri of his left knee that definitely showed that it was a " hot

"

joint and that was a help in his diagnosis. Now, they are second

guessing his diagnosis of pauci- for which I am glad- but how do you go

about seeing what's happening all over? Is there such a thing? I'd also

like some testing or some recommendations for Ehler Danlos. He doesn't

fit the whole criteria- it's possible, I suppose to have both

hypermobility and jra. Anyway, I'd be happy for any recommendations from

you all.

Thanks

Virginia

(11 (pauci))

[Guest guest]

Hi Michele

Thanks- I think you've written before about the similarity in our two Chris'. It does help tremendously to hear from you. I did check to see if could touch his toes. He can, but just barely. It's very interesting-he's extremely hypermobile and can do all sorts of things- touch his thumb to his arm, put his legs behind his head pretzel style etc, but he had a stretch to touch his toes and his back and neck are consistently stiff. Does your take meds or do pt or exercises now?

Thanks

Virginia

On Wed, 14 Nov 2007 10:52:14 -0600 "Tepper, Michele" <MTepper@...> writes:

Hi Virginia. Sorry to respond late – I am trying to catch up on emails. Your son may have spondylitis which often starts as a pauci diagnosis and as more things become involved (especially the areas you mention), the dr may change to spondy. Your sounds a lot like mine. There is no scan type test really, it is more the dr laying hands on and feeling for the inflammation. My suggestion would be to check and see if your son can touch his toes. Believe it or not, when my son began to have the pain your son is, the dr performed a simple test where they measure how far his back could bend. I had never noticed but could not touch his toes anymore, at the age of 13! With the right meds and some physical therapy, he was able to bend and run and walk without a limp. FYI – spondy (anklosing spondylitis or spondyloarthropy) causes inflammation of the tendons primarily rather than only in joints. That is why the pain can be in so many different places.

I hope your son gets some relief soon, Michele ( 20, spondy)

From: [mailto: ] On Behalf Of P WoodsSent: Saturday, November 10, 2007 11:54 AM Subject: advice on scans/ MRIs/ xray/ other diagnostic tools

HiBy the way- it is really neat to see the way everyone on this listsupports each other in jra related things or life in general. It is avery encouraging group!I'd like to get some more advice from you all on diagnostic tools. Chrishas been off of Remicade now for a bit. His last infusion was Aug 28- soabout 10 weeks. He is in quite a bit of pain, but making it okay. Hegets pretty pale around the mouth and I can tell he's hurting. He isstill getting around okay. He limps to the tub first thing in themorning and takes a hot bath. He hurts all over- but especially hisneck, back, knees, ankles, toes, and shoulders and sometimes hips. I'vebeen measuring some and he fluctuates some, but his left knee has grownby 3/4 inch and his right big toe by 1 cm. These are very minutechanges. Anyway- we are to see the dr the monday after thanksgiving and I'd liketo have some ideas of things to make sure that I don't forget. They'lldo some labs and hopefully repeat some that haven't been done in severalyears, but I'm wondering if I should ask for some type of scan to seewhat activity is going on. Initially, when he was first diagnosed, hehad an mri of his left knee that definitely showed that it was a "hot "joint and that was a help in his diagnosis. Now, they are secondguessing his diagnosis of pauci- for which I am glad- but how do you goabout seeing what's happening all over? Is there such a thing? I'd alsolike some testing or some recommendations for Ehler Danlos. He doesn'tfit the whole criteria- it's possible, I suppose to have bothhypermobility and jra. Anyway, I'd be happy for any recommendations fromyou all.ThanksVirginia (11 (pauci))