hip pain

[Guest guest]

I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie on Happy Days. I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.grannylunatic@...

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie on Happy Days. I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.grannylunatic@...

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Remicade is fantastic for the sarcoid induced arthritis. Rheumi should know that. He may be old school, but the Biological Modifiers are showing alot of promise with RA and psoriatic arthritis. It stands to reason that the sarc-arthritis would respond well also. (And it does!)

Type in Om Sharma, MD (USC LA) and pull up some of his articles on Remicade and Sarcoidosis. Take them to Rheumi. See if Rheumi will consult with Dr. Sharma. Also, Baughmann, MD has several articles on the benefit of Remicade and Sarcoidosis.

The Phase II Clinical Study for "Inflixamab in the treatment of pulmonary and ocular sarcoidosis" is authored by Dr. Sharma and Dr. Baughmann. I'm sure your Rheumi will have access to the article via his networks.

So far as I understand it-- the Phase III Study can't go ahead as they can't find enough people to conduct it. They'd need around 1500 for a double blind study. I was in a group of 120--worldwide.

You may want to tell your Rheumi that you would truly appreciate it if he would take the time to research the complications of systemic sarcoidosis-- and that once it gets into more than "just the lungs" that the chances of it being progressive is quite high. Unfortunately, just from the fact that you have ocular and arthritis complications- already, puts you into a higher risk category. Let him know that you need him as part of your team-- and you're depending on him to do what is right. And right is to learn about how to treat you.

I'll try to look into the Rheumi journals-- and see what I can find.

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

Remicade is fantastic for the sarcoid induced arthritis. Rheumi should know that. He may be old school, but the Biological Modifiers are showing alot of promise with RA and psoriatic arthritis. It stands to reason that the sarc-arthritis would respond well also. (And it does!)

Type in Om Sharma, MD (USC LA) and pull up some of his articles on Remicade and Sarcoidosis. Take them to Rheumi. See if Rheumi will consult with Dr. Sharma. Also, Baughmann, MD has several articles on the benefit of Remicade and Sarcoidosis.

The Phase II Clinical Study for "Inflixamab in the treatment of pulmonary and ocular sarcoidosis" is authored by Dr. Sharma and Dr. Baughmann. I'm sure your Rheumi will have access to the article via his networks.

So far as I understand it-- the Phase III Study can't go ahead as they can't find enough people to conduct it. They'd need around 1500 for a double blind study. I was in a group of 120--worldwide.

You may want to tell your Rheumi that you would truly appreciate it if he would take the time to research the complications of systemic sarcoidosis-- and that once it gets into more than "just the lungs" that the chances of it being progressive is quite high. Unfortunately, just from the fact that you have ocular and arthritis complications- already, puts you into a higher risk category. Let him know that you need him as part of your team-- and you're depending on him to do what is right. And right is to learn about how to treat you.

I'll try to look into the Rheumi journals-- and see what I can find.

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

, OMG I'm doing the same silly stuff. That's what happened when I fell back in Feb and broke my left ankle and my right foot. I was dreaming I was actually building a video store.. I mean putting the nuts and bolts in the walls.. I've never done this kind of work, but I was a hard dedicated worker.

Lately I woke up on my hands and knees trying to dig for the telephone that I thought had fallen under my bed.. Well what a surprise when the phone rang and it was on the table where it was suppose to be. Its beginning to scare me a bit because its getting more frequent.. I'm not on any new meds however my creatine which is a lab test done to determine kidney functions is way out high once again, this can mean simple dehydration, or more importantly renal failure. And my Hct which is used to determine the level of blood in my system has dropped back down to 26, normal is 37-40.. I'm waking up sitting on the toliet and I wake up as I'm about to fall off..

Its truly scary, I wish I could help you.. my son has just about disowned me, because I'm doing crazy stuff..

Hope you stay in that chair.. and me in that bed...

-- RE: HIP pain

I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie on Happy Days. I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.grannylunatic@...

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

, OMG I'm doing the same silly stuff. That's what happened when I fell back in Feb and broke my left ankle and my right foot. I was dreaming I was actually building a video store.. I mean putting the nuts and bolts in the walls.. I've never done this kind of work, but I was a hard dedicated worker.

Lately I woke up on my hands and knees trying to dig for the telephone that I thought had fallen under my bed.. Well what a surprise when the phone rang and it was on the table where it was suppose to be. Its beginning to scare me a bit because its getting more frequent.. I'm not on any new meds however my creatine which is a lab test done to determine kidney functions is way out high once again, this can mean simple dehydration, or more importantly renal failure. And my Hct which is used to determine the level of blood in my system has dropped back down to 26, normal is 37-40.. I'm waking up sitting on the toliet and I wake up as I'm about to fall off..

Its truly scary, I wish I could help you.. my son has just about disowned me, because I'm doing crazy stuff..

Hope you stay in that chair.. and me in that bed...

-- RE: HIP pain

I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie on Happy Days. I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.grannylunatic@...

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Marla,

My hip pain was worse at night when I laid in on my sides..right

side puts pressure on the joint itself and left side pulls the

ligament. Dr explained that with the extra bone growth the ligament

gets pulled over the joint, it just isn't long enough for for the

extra bone. I was stuck laying on my back. I'd had this pain for 5-

6 years when one morning I stood up and could not put any weight on

my right hip. I was panic thinking I'd broken my hip rolling over

so something. Primary care said I'd " sprained " my hip and sent me

for an xray and got me into a ortho immediately. The is the doc

that finially explained about the sarc causing the extra bone

growth. I had two injections the first worked great the second not

so much. The day may come when I will have to have something done

but it is doing ok right now. Wonder if the Remicade will help it

the bone growth? I have my third infusion on Thursday. My

headaches have come back in the last week and some joint pain but

other than that I have been doing well. Compared to what I had this

I can deal with. It is nothing less than a miracle for me.

If you can get your hip checked out I think you should....there may

be something that can be done. The shots are not pleasant and they

hurt like crazy...but only for about 30 seconds..the relief is

immediate.

Good Luck....

Ruth

> >

> > My husband (pulmonary sarcoidosis) is having right shoulder

pain.

> We

> > have had him to an ortho-pod and he is willing to perform

surgery

> > (shave off part of the bone). Does anyone else have shoulder

pain -

> > that may be attributed to saroidosis?

> >

>

[Guest guest]

Marla,

My hip pain was worse at night when I laid in on my sides..right

side puts pressure on the joint itself and left side pulls the

ligament. Dr explained that with the extra bone growth the ligament

gets pulled over the joint, it just isn't long enough for for the

extra bone. I was stuck laying on my back. I'd had this pain for 5-

6 years when one morning I stood up and could not put any weight on

my right hip. I was panic thinking I'd broken my hip rolling over

so something. Primary care said I'd " sprained " my hip and sent me

for an xray and got me into a ortho immediately. The is the doc

that finially explained about the sarc causing the extra bone

growth. I had two injections the first worked great the second not

so much. The day may come when I will have to have something done

but it is doing ok right now. Wonder if the Remicade will help it

the bone growth? I have my third infusion on Thursday. My

headaches have come back in the last week and some joint pain but

other than that I have been doing well. Compared to what I had this

I can deal with. It is nothing less than a miracle for me.

If you can get your hip checked out I think you should....there may

be something that can be done. The shots are not pleasant and they

hurt like crazy...but only for about 30 seconds..the relief is

immediate.

Good Luck....

Ruth

> >

> > My husband (pulmonary sarcoidosis) is having right shoulder

pain.

> We

> > have had him to an ortho-pod and he is willing to perform

surgery

> > (shave off part of the bone). Does anyone else have shoulder

pain -

> > that may be attributed to saroidosis?

> >

>

[Guest guest]

Thanks Tracie...I thought the doc told me the next would be 6 weeks

then 8? I am making my list of questions. Rheumatologist said he is

only doing the Remicade because of the eye involment so I doubt he

will listen about the bone pain/ headaches but I will try.

Thx

Ruth

>

> Ruth,

>

> You'll find that the Remicade will help with the bone pain-- and if

you're

> not getting to the 4wk interval without pain-- then tell your MD.

They may have

> to go up to a 5mg/kg dose, the next interval is out 8 wks-- and if

you aren't

> getting to this 4 wk one-- 8's not gonna be easy.

>

> I do hope they'll adjust your schedule and dosage.

>

> Take care,

> Tracie

>

[Guest guest]

Thanks Tracie...I thought the doc told me the next would be 6 weeks

then 8? I am making my list of questions. Rheumatologist said he is

only doing the Remicade because of the eye involment so I doubt he

will listen about the bone pain/ headaches but I will try.

Thx

Ruth

>

> Ruth,

>

> You'll find that the Remicade will help with the bone pain-- and if

you're

> not getting to the 4wk interval without pain-- then tell your MD.

They may have

> to go up to a 5mg/kg dose, the next interval is out 8 wks-- and if

you aren't

> getting to this 4 wk one-- 8's not gonna be easy.

>

> I do hope they'll adjust your schedule and dosage.

>

> Take care,

> Tracie

>

[Guest guest]

Hi & Theresa, I have done odd things in my sleep also. I wake up to find myself reaching for things, jumping out of bed and doing things, and jerking myself awake. I scream in my sleep and talk . I never did this at all before. I haven't hurt myself as of yet. You two have got to take it easy! I blame my activity on the meds. I don't know what else it could be. Debbie wrote: , OMG I'm doing the same silly stuff. That's what happened when I fell back in Feb and broke my left ankle and my right foot. I was dreaming I was actually building a video store.. I mean putting the nuts and bolts in the walls.. I've never done this kind of work, but I was a hard dedicated worker. Lately I woke up on my hands and knees trying to dig for the telephone that I thought had fallen under my bed.. Well what a surprise when the phone rang and it was on the table where it

was suppose to be. Its beginning to scare me a bit because its getting more frequent.. I'm not on any new meds however my creatine which is a lab test done to determine kidney functions is way out high once again, this can mean simple dehydration, or more importantly renal failure. And my Hct which is used to determine the level of blood in my system has dropped back down to 26, normal is 37-40.. I'm waking up sitting on the toliet and I wake up as I'm about to fall off.. Its truly scary, I wish I could help you.. my son has just about disowned me, because I'm doing crazy stuff.. Hope you stay in that chair.. and me in that bed... -- RE: HIP pain I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie on Happy Days. I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next

thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.grannylunatic@... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1�/min. < Arial>

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Hi & Theresa, I have done odd things in my sleep also. I wake up to find myself reaching for things, jumping out of bed and doing things, and jerking myself awake. I scream in my sleep and talk . I never did this at all before. I haven't hurt myself as of yet. You two have got to take it easy! I blame my activity on the meds. I don't know what else it could be. Debbie wrote: , OMG I'm doing the same silly stuff. That's what happened when I fell back in Feb and broke my left ankle and my right foot. I was dreaming I was actually building a video store.. I mean putting the nuts and bolts in the walls.. I've never done this kind of work, but I was a hard dedicated worker. Lately I woke up on my hands and knees trying to dig for the telephone that I thought had fallen under my bed.. Well what a surprise when the phone rang and it was on the table where it

was suppose to be. Its beginning to scare me a bit because its getting more frequent.. I'm not on any new meds however my creatine which is a lab test done to determine kidney functions is way out high once again, this can mean simple dehydration, or more importantly renal failure. And my Hct which is used to determine the level of blood in my system has dropped back down to 26, normal is 37-40.. I'm waking up sitting on the toliet and I wake up as I'm about to fall off.. Its truly scary, I wish I could help you.. my son has just about disowned me, because I'm doing crazy stuff.. Hope you stay in that chair.. and me in that bed... -- RE: HIP pain I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie on Happy Days. I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next

thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.grannylunatic@... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1�/min. < Arial>

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Hi & Theresa, I have done odd things in my sleep also. I wake up to find myself reaching for things, jumping out of bed and doing things, and jerking myself awake. I scream in my sleep and talk . I never did this at all before. I haven't hurt myself as of yet. You two have got to take it easy! I blame my activity on the meds. I don't know what else it could be. Debbie wrote: , OMG I'm doing the same silly stuff. That's what happened when I fell back in Feb and broke my left ankle and my right foot. I was dreaming I was actually building a video store.. I mean putting the nuts and bolts in the walls.. I've never done this kind of work, but I was a hard dedicated worker. Lately I woke up on my hands and knees trying to dig for the telephone that I thought had fallen under my bed.. Well what a surprise when the phone rang and it was on the table where it

was suppose to be. Its beginning to scare me a bit because its getting more frequent.. I'm not on any new meds however my creatine which is a lab test done to determine kidney functions is way out high once again, this can mean simple dehydration, or more importantly renal failure. And my Hct which is used to determine the level of blood in my system has dropped back down to 26, normal is 37-40.. I'm waking up sitting on the toliet and I wake up as I'm about to fall off.. Its truly scary, I wish I could help you.. my son has just about disowned me, because I'm doing crazy stuff.. Hope you stay in that chair.. and me in that bed... -- RE: HIP pain I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie on Happy Days. I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next

thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.grannylunatic@... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1�/min. < Arial>

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

,

You are not called Granny lunatic for nothing!

Terri G.>> I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie on Happy Days. I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.> > > grannylunatic@...> > ---------------------------------> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.>

[Guest guest]

,

You are not called Granny lunatic for nothing!

Terri G.>> I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie on Happy Days. I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.> > > grannylunatic@...> > ---------------------------------> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.>

[Guest guest]

,

You are not called Granny lunatic for nothing!

Terri G.>> I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie on Happy Days. I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.> > > grannylunatic@...> > ---------------------------------> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.>

[Guest guest]

Ruth,

Thanks

for sharing, I can lay on my right side, the pain is on the left and I can’t

lay on my left. I can’t lay on my back either, I have trouble breathing,

and will start coughing, and won’t stop until I get off my back. I think

I will get it checked out though.

I’m

praying for a pain free day for us all.

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Ruth

Sent: Sunday, June 25, 2006 8:24

PM

To: Neurosarcoidosis

Subject: Re:

HIP pain

Marla,

My hip pain was worse at night when I laid in on my sides..right

side puts pressure on the joint itself and left side pulls the

ligament. Dr explained that with the extra bone growth the ligament

gets pulled over the joint, it just isn't long enough for for the

extra bone. I was stuck laying on my back. I'd had this pain for 5-

6 years when one morning I stood up and could not put any weight on

my right hip. I was panic thinking I'd broken my hip rolling over

so something. Primary care said I'd " sprained " my hip and sent me

for an xray and got me into a ortho immediately. The is the doc

that finially explained about the sarc causing the extra bone

growth. I had two injections the first worked great the second not

so much. The day may come when I will have to have something done

but it is doing ok right now. Wonder if the Remicade will help it

the bone growth? I have my third infusion on Thursday. My

headaches have come back in the last week and some joint pain but

other than that I have been doing well. Compared to what I had this

I can deal with. It is nothing less than a miracle for me.

If you can get your hip checked out I think you should....there may

be something that can be done. The shots are not pleasant and they

hurt like crazy...but only for about 30 seconds..the relief is

immediate.

Good Luck....

Ruth

> >

> > My husband (pulmonary sarcoidosis) is having right shoulder

pain.

> We

> > have had him to an ortho-pod and he is willing to perform

surgery

> > (shave off part of the bone). Does anyone else have shoulder

pain -

> > that may be attributed to saroidosis?

> >

>

[Guest guest]

Marla i am so sorry u are having a rough time- i

sincerly hope that u are able to find out what is

wrong and that you better soon. MATT

--- Marla mebramer@...> wrote:

> Ruth,

>

> Thanks for sharing, I can lay on my right side, the

> pain is on the left and

> I can't lay on my left. I can't lay on my back

> either, I have trouble

> breathing, and will start coughing, and won't stop

> until I get off my back.

> I think I will get it checked out though.

>

> I'm praying for a pain free day for us all.

>

> Marla

>

>

>

> _____

>

> From: Neurosarcoidosis

> [mailto:Neurosarcoidosis ] On Behalf

> Of Ruth

> Sent: Sunday, June 25, 2006 8:24 PM

> To: Neurosarcoidosis

> Subject: Re: HIP pain

>

>

>

> Marla,

>

> My hip pain was worse at night when I laid in on my

> sides..right

> side puts pressure on the joint itself and left side

> pulls the

> ligament. Dr explained that with the extra bone

> growth the ligament

> gets pulled over the joint, it just isn't long

> enough for for the

> extra bone. I was stuck laying on my back. I'd had

> this pain for 5-

> 6 years when one morning I stood up and could not

> put any weight on

> my right hip. I was panic thinking I'd broken my hip

> rolling over

> so something. Primary care said I'd " sprained " my

> hip and sent me

> for an xray and got me into a ortho immediately. The

> is the doc

> that finially explained about the sarc causing the

> extra bone

> growth. I had two injections the first worked great

> the second not

> so much. The day may come when I will have to have

> something done

> but it is doing ok right now. Wonder if the Remicade

> will help it

> the bone growth? I have my third infusion on

> Thursday. My

> headaches have come back in the last week and some

> joint pain but

> other than that I have been doing well. Compared to

> what I had this

> I can deal with. It is nothing less than a miracle

> for me.

>

> If you can get your hip checked out I think you

> should....there may

> be something that can be done. The shots are not

> pleasant and they

> hurt like crazy...but only for about 30 seconds..the

> relief is

> immediate.

>

> Good Luck....

>

> Ruth

>

>

> > >

> > > My husband (pulmonary sarcoidosis) is having

> right shoulder

> pain.

> > We

> > > have had him to an ortho-pod and he is willing

> to perform

> surgery

> > > (shave off part of the bone). Does anyone else

> have shoulder

> pain -

> > > that may be attributed to saroidosis?

> > >

> >

>

>

>

>

__________________________________________________

[Guest guest]

Marla, I can't remember, are you on steroids. They cause a lot of hip problems. If the dose is leaning toward the high side it can really get achy///ConnieMarla wrote: I keep wondering if I should have my hip checked out, I have pain in it most of the time, not just the neuro type pain, I wake up at night with the hip pain, I just keep

saying it’s just the sarcoid and there’s nothing anyone can do about it, I don’t know what do you all think? Marla From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of RuthSent: Saturday, June 24, 2006 5:37 PMTo: Neurosarcoidosis Subject: Re: Shoulder Pain... I don't have shoulder pain but for several years I have had hip pain which finially was explained in the last year as caused from extra bone growth from the sarcoid...the same option was offered but I had several corisone injections and it has calmed down right now. So far so good. Good

luchRuth-- In Neurosarcoidosis , "missmoe" wrote:>> My husband (pulmonary sarcoidosis) is having right shoulder pain. We > have had him to an ortho-pod and he is willing to perform surgery > (shave off part of the bone). Does anyone else have shoulder pain - > that may be attributed to saroidosis?>

Yahoo! Groups gets better. Check out the new email design. Plus there’s much more to come.

[Guest guest]

, I'm so sorry you fell out of bed, but I have to confess I got tickled reading it the way you wrote it. Please be careful girlfriend, and for heavens sakes dream of hardtops///Connie wrote: I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie on Happy Days.

I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.grannylunatic@... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Thanks Terri, You saved me some pacemaker battery. After I pushed the "hear me talk" button and it screeched and hit the glass, hang i didn't my pacemaker for a nice little while. Brought my heartrate right up and scared me to death. You guys are the best//Conniemosaicgirl1 wrote: , You are not called Granny lunatic for nothing! Terri G.>> I take every opportunity to complain about pain to anyone who will listen! Tell your doc about it. I just got back from the ER here because I fell out of bed AGAIN about 1PM my time. I I had a dream there was a convertible car out front & I was going to jump in it like Fonzie

on Happy Days. I then thought "DON'T DO IT DUMMY! THIS IS A DREAM!" The next thing I knew my head was hitting the floor.I do this silly stuff every time I move or move my bed. Nothing's broken (bone wise) & the woobles are a side effect of some types of chemo according to the doc on call. I now have orders from my daughter to keep my butt in the chair until this crap eases up.> > > grannylunatic@...> > ---------------------------------> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.>

Yahoo! Sports Fantasy Football ’06 - Go with the leader. Start your league today!

[Guest guest]

Connie,

Welcome!

Terri

> >

> > I take every opportunity to complain about pain to anyone who will

listen! Tell your doc about it. I just got back from the ER here because

I fell out of bed AGAIN about 1PM my time. I I had a dream there was a

convertible car out front & I was going to jump in it like Fonzie on

Happy Days. I then thought " DON'T DO IT DUMMY! THIS IS A DREAM! " The

next thing I knew my head was hitting the floor.I do this silly stuff

every time I move or move my bed. Nothing's broken (bone wise) & the

woobles are a side effect of some types of chemo according to the doc on

call. I now have orders from my daughter to keep my butt in the chair

until this crap eases up.

> >

> >

> > grannylunatic@

> >

> > ---------------------------------

> > Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great

rates starting at 1¢/min.

> >

>

>

>

>

>

>

>

>

>

>

>

>

> ---------------------------------

> Yahoo! Sports Fantasy Football '06 - Go with the leader. Start

your league today!

>

[Guest guest]

Tracie....I couldn't find the Remicade Clinical Trial you mentioned

but I am writing the doctors names and will take the info to the

Rheumatologist tomorrow. I'll keep looking for it. He is a realy

really old school but he is learning and documenting my progress

well. And he is admitting he is learning. I think he is as amazed

as I am as to how well I am doing on the Remicade. It is such a

blessing and I am thankful everyday for it.

Thanks again

Ruth

PS.....any news from Kim? I am very worry about her.

Neurosarcoidosis , tiodaat@... wrote:

>

> Remicade is fantastic for the sarcoid induced arthritis. Rheumi

should know

> that. He may be old school, but the Biological Modifiers are

showing alot of

> promise with RA and psoriatic arthritis. It stands to reason that

the

> sarc-arthritis would respond well also. (And it does!)

>

> Type in Om Sharma, MD (USC LA) and pull up some of his articles on

Remicade

> and Sarcoidosis. Take them to Rheumi. See if Rheumi will consult

with Dr.

> Sharma. Also, Baughmann, MD has several articles on the

benefit of

> Remicade and Sarcoidosis.

>

> The Phase II Clinical Study for " Inflixamab in the treatment of

pulmonary and

> ocular sarcoidosis " is authored by Dr. Sharma and Dr. Baughmann.

I'm sure

> your Rheumi will have access to the article via his networks.

>

> So far as I understand it-- the Phase III Study can't go ahead as

they can't

> find enough people to conduct it. They'd need around 1500 for a

double blind

> study. I was in a group of 120--worldwide.

>

> You may want to tell your Rheumi that you would truly appreciate

it if he

> would take the time to research the complications of systemic

sarcoidosis-- and

> that once it gets into more than " just the lungs " that the chances

of it being

> progressive is quite high. Unfortunately, just from the fact that

you have

> ocular and arthritis complications- already, puts you into a

higher risk

> category. Let him know that you need him as part of your team--

and you're depending

> on him to do what is right. And right is to learn about how to

treat you.

>

> I'll try to look into the Rheumi journals-- and see what I can

find.

>

> Take care,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

Thanks

Matt,

But my

hip pain is nothing compared to your pain with those darn stones, are they all

out yet? I keep praying you can just pass them all.

Smiles,

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On

Behalf Of Cohen

Sent: Tuesday, June 27, 2006 2:08

PM

To:

Neurosarcoidosis

Subject: RE:

Re: HIP pain

Marla i

am so sorry u are having a rough time- i

sincerly hope that u are able to find out what is

wrong and that you better soon. MATT

--- Marla <mebramer (AT) gmail (DOT) com>

wrote:

> Ruth,

>

> Thanks for sharing, I can lay on my right side, the

> pain is on the left and

> I can't lay on my left. I can't lay on my back

> either, I have trouble

> breathing, and will start coughing, and won't stop

> until I get off my back.

> I think I will get it checked out though.

>

> I'm praying for a pain free day for us all.

>

> Marla

>

>

>

> _____

>

> From: Neurosarcoidosis

> [mailto:Neurosarcoidosis ]

On Behalf

> Of Ruth

> Sent: Sunday, June 25, 2006 8:24 PM

> To: Neurosarcoidosis

> Subject: Re: HIP pain

>

>

>

> Marla,

>

> My hip pain was worse at night when I laid in on my

> sides..right

> side puts pressure on the joint itself and left side

> pulls the

> ligament. Dr explained that with the extra bone

> growth the ligament

> gets pulled over the joint, it just isn't long

> enough for for the

> extra bone. I was stuck laying on my back. I'd had

> this pain for 5-

> 6 years when one morning I stood up and could not

> put any weight on

> my right hip. I was panic thinking I'd broken my hip

> rolling over

> so something. Primary care said I'd " sprained " my

> hip and sent me

> for an xray and got me into a ortho immediately. The

> is the doc

> that finially explained about the sarc causing the

> extra bone

> growth. I had two injections the first worked great

> the second not

> so much. The day may come when I will have to have

> something done

> but it is doing ok right now. Wonder if the Remicade

> will help it

> the bone growth? I have my third infusion on

> Thursday. My

> headaches have come back in the last week and some

> joint pain but

> other than that I have been doing well. Compared to

> what I had this

> I can deal with. It is nothing less than a miracle

> for me.

>

> If you can get your hip checked out I think you

> should....there may

> be something that can be done. The shots are not

> pleasant and they

> hurt like crazy...but only for about 30 seconds..the

> relief is

> immediate.

>

> Good Luck....

>

> Ruth

>

>

> > >

> > > My husband (pulmonary sarcoidosis) is having

> right shoulder

> pain.

> > We

> > > have had him to an ortho-pod and he is willing

> to perform

> surgery

> > > (shave off part of the bone). Does anyone else

> have shoulder

> pain -

> > > that may be attributed to saroidosis?

> > >

> >

>

>

>

>

__________________________________________________

[Guest guest]

Thanks

Matt,

But my

hip pain is nothing compared to your pain with those darn stones, are they all

out yet? I keep praying you can just pass them all.

Smiles,

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On

Behalf Of Cohen

Sent: Tuesday, June 27, 2006 2:08

PM

To:

Neurosarcoidosis

Subject: RE:

Re: HIP pain

Marla i

am so sorry u are having a rough time- i

sincerly hope that u are able to find out what is

wrong and that you better soon. MATT

--- Marla <mebramer (AT) gmail (DOT) com>

wrote:

> Ruth,

>

> Thanks for sharing, I can lay on my right side, the

> pain is on the left and

> I can't lay on my left. I can't lay on my back

> either, I have trouble

> breathing, and will start coughing, and won't stop

> until I get off my back.

> I think I will get it checked out though.

>

> I'm praying for a pain free day for us all.

>

> Marla

>

>

>

> _____

>

> From: Neurosarcoidosis

> [mailto:Neurosarcoidosis ]

On Behalf

> Of Ruth

> Sent: Sunday, June 25, 2006 8:24 PM

> To: Neurosarcoidosis

> Subject: Re: HIP pain

>

>

>

> Marla,

>

> My hip pain was worse at night when I laid in on my

> sides..right

> side puts pressure on the joint itself and left side

> pulls the

> ligament. Dr explained that with the extra bone

> growth the ligament

> gets pulled over the joint, it just isn't long

> enough for for the

> extra bone. I was stuck laying on my back. I'd had

> this pain for 5-

> 6 years when one morning I stood up and could not

> put any weight on

> my right hip. I was panic thinking I'd broken my hip

> rolling over

> so something. Primary care said I'd " sprained " my

> hip and sent me

> for an xray and got me into a ortho immediately. The

> is the doc

> that finially explained about the sarc causing the

> extra bone

> growth. I had two injections the first worked great

> the second not

> so much. The day may come when I will have to have

> something done

> but it is doing ok right now. Wonder if the Remicade

> will help it

> the bone growth? I have my third infusion on

> Thursday. My

> headaches have come back in the last week and some

> joint pain but

> other than that I have been doing well. Compared to

> what I had this

> I can deal with. It is nothing less than a miracle

> for me.

>

> If you can get your hip checked out I think you

> should....there may

> be something that can be done. The shots are not

> pleasant and they

> hurt like crazy...but only for about 30 seconds..the

> relief is

> immediate.

>

> Good Luck....

>

> Ruth

>

>

> > >

> > > My husband (pulmonary sarcoidosis) is having

> right shoulder

> pain.

> > We

> > > have had him to an ortho-pod and he is willing

> to perform

> surgery

> > > (shave off part of the bone). Does anyone else

> have shoulder

> pain -

> > > that may be attributed to saroidosis?

> > >

> >

>

>

>

>

__________________________________________________