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, I had some excruciating hip pain last Feb. Couldn't lay on my

right side. Killed me to walk. Dr. first thought a pulled muscle. Afterx

rays and MRI is was found I have a buldging disc and spinal stenosis for

which I had 3 epidural steroid injections, which have lessened the pain,

but not taken it away. Now the Drs. and I are considering surgery but

they can't agree on what to do and I am getting the runaround. My hip

pain never went down into my leg, just stayed in my low back and hips.

So this confused them. LOL confuses me too! The pelvic and lumbar Xrays

and MRI are undergoing 'scrutiny' to ascertain how the docs will

proceed. I have been on pain meds, stiff ones, that did absolutely

nothing for the pain. Ice packs help the most. Also getting alot of rest

until next treatment is set. And doc said I have to stop gardening for

awhile :( What stress!

Gretchen

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Hi everybody! I had to put in my two cents worth on hip pain. For several

years I had extreme pain in my right hip and eventually reached a point where

walking was unbearable. The orthopedic surgeon I had gone to for years kept

telling me that it was simply CMT pain and that I would have to suck it up

and learn to live with it. A week later I was at my internist for a checkup

and he told me I looked terrible. I told him that I was exhausted from pain

and lack of sleep due to the extreme hip pain. He immediately called a

different orthopedic surgeon and told him that he wanted him to see me the

next morning, which was a Saturday. Well, he met me at the hospital and had

me x-rayed( which the other O.surgeon would never do). Turned out that my

right hip was bone on bone. He said he couldn't believe that I was actually

walking at all. Several months later he performed a hip replacement. I was

44 at the time. That was two years ago and it was the best thing I ever did.

Rehab was difficult, but the rehab doctor was quite knowedgeable about CMT

and had me up and going immediately. Now, 2 years later I'm still happy with

the results.

Many doctors believe that hip replacements should not be done on people this

young, but as my doctor pointed out, if I had waited until I was

sixty-something I would be totally crippled and my muscles would be so

aptrophed from non-use(the good ones, that is) that surgery would be useless.

Of cousrse, I will probably have to have another hip replacement 15 to 20

years from now, but that's fine with me.

The severe arthritis in my hip was a result from limping and walking " funny "

all my life.

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Hi everybody! I had to put in my two cents worth on hip pain. For several

years I had extreme pain in my right hip and eventually reached a point where

walking was unbearable. The orthopedic surgeon I had gone to for years kept

telling me that it was simply CMT pain and that I would have to suck it up

and learn to live with it. A week later I was at my internist for a checkup

and he told me I looked terrible. I told him that I was exhausted from pain

and lack of sleep due to the extreme hip pain. He immediately called a

different orthopedic surgeon and told him that he wanted him to see me the

next morning, which was a Saturday. Well, he met me at the hospital and had

me x-rayed( which the other O.surgeon would never do). Turned out that my

right hip was bone on bone. He said he couldn't believe that I was actually

walking at all. Several months later he performed a hip replacement. I was

44 at the time. That was two years ago and it was the best thing I ever did.

Rehab was difficult, but the rehab doctor was quite knowedgeable about CMT

and had me up and going immediately. Now, 2 years later I'm still happy with

the results.

Many doctors believe that hip replacements should not be done on people this

young, but as my doctor pointed out, if I had waited until I was

sixty-something I would be totally crippled and my muscles would be so

aptrophed from non-use(the good ones, that is) that surgery would be useless.

Of cousrse, I will probably have to have another hip replacement 15 to 20

years from now, but that's fine with me.

The severe arthritis in my hip was a result from limping and walking " funny "

all my life.

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Re: Hip pain

>Hi everybody! I had to put in my two cents worth on hip pain. For several

>years I had extreme pain in my right hip and eventually reached a point

where

>walking was unbearable. The orthopedic surgeon I had gone to for years

kept

>telling me that it was simply CMT pain and that I would have to suck it up

>and learn to live with it. A week later I was at my internist for a checkup

>and he told me I looked terrible. I told him that I was exhausted from

pain

>and lack of sleep due to the extreme hip pain. He immediately called a

>different orthopedic surgeon and told him that he wanted him to see me the

>next morning, which was a Saturday. Well, he met me at the hospital and

had

>me x-rayed( which the other O.surgeon would never do). Turned out that my

>right hip was bone on bone.

>>>>>>>>>>>>>> Could this be from the lack of muscle support in the hip

area? The constant pulling from the strong side? The wear and tear on it.

I have hip and leg pain but was told it was sciatica, after reading so many

stories of hip pain, I think maybe its caused from CMT. (lack of muscle

support). ~>Becky

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In a message dated 7/31/00 9:37:32 PM Eastern Daylight Time, rmax@...

writes:

<< hip pain, I think maybe its caused from CMT >>

Hello the House,

Hi Becky, I would say the hip problems are indirectly caused from cmt.

With bad feet we usually walk with an improper gait, that in turn causes wear

and tear in the hip area, bones muscles tendons, etc. Has your surgeon

recommended hip replacement? My brother had all those problems, had his hip

replaced and is doing great. Now he is 68 yrs of age and they say the hip

replacement only last about 15yrs. They don't like to do the operation a

second time so you may be to young for that. Again follow your chosen

surgeons advice.

E

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In a message dated 7/31/00 9:37:32 PM Eastern Daylight Time, rmax@...

writes:

<< hip pain, I think maybe its caused from CMT >>

Hello the House,

Hi Becky, I would say the hip problems are indirectly caused from cmt.

With bad feet we usually walk with an improper gait, that in turn causes wear

and tear in the hip area, bones muscles tendons, etc. Has your surgeon

recommended hip replacement? My brother had all those problems, had his hip

replaced and is doing great. Now he is 68 yrs of age and they say the hip

replacement only last about 15yrs. They don't like to do the operation a

second time so you may be to young for that. Again follow your chosen

surgeons advice.

E

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, Cathy C. here. I had a hip replacement 2 years ago when I was 44. it's

true that it'll only last 15 to 20 years, but the surgeon used a different

method on me because I was younger. In older patients they " cement " the

prostheses into the thigh, but in my case it was more like a grout and the

implant itself was rough which encouraged my bone to grow around it and bond

to it solidly. This can't be done in older patients because they aren't

going to regenerate bone. Like I said in a previous posting, my doctor

pointed out that if I waited 20 more years it would be useless to do it

because I would be so totally crippled from muscle aptrophy due to the

inablility to move because the pain was unbearable. I wish I had done it

even earlier. I suffered tremendously for 2 years because another doctor

told me it was " just CMT pain and I'd I've to learn to live with it. "

Sometimes I wish doctors could walk a mile in our shoes-----of course I can't

even walk a mile in my own shoes!!!!!

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, Cathy C. here. I had a hip replacement 2 years ago when I was 44. it's

true that it'll only last 15 to 20 years, but the surgeon used a different

method on me because I was younger. In older patients they " cement " the

prostheses into the thigh, but in my case it was more like a grout and the

implant itself was rough which encouraged my bone to grow around it and bond

to it solidly. This can't be done in older patients because they aren't

going to regenerate bone. Like I said in a previous posting, my doctor

pointed out that if I waited 20 more years it would be useless to do it

because I would be so totally crippled from muscle aptrophy due to the

inablility to move because the pain was unbearable. I wish I had done it

even earlier. I suffered tremendously for 2 years because another doctor

told me it was " just CMT pain and I'd I've to learn to live with it. "

Sometimes I wish doctors could walk a mile in our shoes-----of course I can't

even walk a mile in my own shoes!!!!!

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In a message dated 8/2/00 12:48:01 AM Eastern Daylight Time,

CathyC1520@... writes:

<< Sometimes I wish doctors could walk a mile in our shoes-----of course I

can't

even walk a mile in my own shoes!!!!! >>

Your information on Hip replacement was good, very informative. In

reference to doctors, I am afraid like most things there are good, bad and

indifferent. When I was looking for help for my foot, one doctor ask me if I

was interested in a prosthesis, another said to live with it (I love that

one). At that point in time I couldn't even walk a block. Fortunately I

found an excellent orthopedic surgeon who was well acquainted with CMT.

E

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In a message dated 8/2/00 12:48:01 AM Eastern Daylight Time,

CathyC1520@... writes:

<< Sometimes I wish doctors could walk a mile in our shoes-----of course I

can't

even walk a mile in my own shoes!!!!! >>

Your information on Hip replacement was good, very informative. In

reference to doctors, I am afraid like most things there are good, bad and

indifferent. When I was looking for help for my foot, one doctor ask me if I

was interested in a prosthesis, another said to live with it (I love that

one). At that point in time I couldn't even walk a block. Fortunately I

found an excellent orthopedic surgeon who was well acquainted with CMT.

E

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At 06:34 PM 05/13/2002 +0000, achyfl wrote:

>

> >I can't

> > stand this, what do you girls do for the pain? Yes I am on alot

>of

> > meds but I can't stand to sit, stand or lay.

I have osteopenia (bone loss) in my hips due to many years of ballet, and

had a spontaneous cervical fracture 2 years ago. I've found a couple of

things that help with the pretty constant ache. First, Celebrex keeps the

inflammation down. I have occasional bone fragments that irritate the hip

cartilage, and Celebrex has been a real godsend in combating that pain,

which is really excruciating.

Second, I've used plasters with a bit of success. I like Tiger Balm

plasters, which I apply kind of in a circle around the hip joint and

pelvis. Awkward, kind of annoying, but the feeling is worth it.

I find when my hips are flaring up that there is really no position that is

truly comfortable. Lying down is the worst; standing is not really

possible. Sitting is the best I can do, since my hips seem to resent that

position the least. Of course sitting on something soft.

I don't have any long-term solutions. A new doctor I saw recently said

that she was stunned I wasn't on any medications for my osteopenia, but I

don't know what medications those might be. Ultimately I will probably

have arthroscopic surgery to remove the fragments of bone, but in the

meantime I've used these remedies with at least some success. I don't know

how much my pain is related to FMS and how much to osteopenia, but even

with the flu I always have intense hip joint pain. It's a bad place for me.

Best,

Em

~~~~~~~~~~~~~

" Even in nice Mr. son's stories, each boy's life only catches

your deepest interest when a pirate is about to slit that sweet child's

throat. What makes a story good ain't what makes a person good. "

(Allan Gurganus)

" Cut a good story anywhere, and it will bleed. "

(Anton Chekhov)

~~~~~~~~~~~~~

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At 06:34 PM 05/13/2002 +0000, achyfl wrote:

>

> >I can't

> > stand this, what do you girls do for the pain? Yes I am on alot

>of

> > meds but I can't stand to sit, stand or lay.

I have osteopenia (bone loss) in my hips due to many years of ballet, and

had a spontaneous cervical fracture 2 years ago. I've found a couple of

things that help with the pretty constant ache. First, Celebrex keeps the

inflammation down. I have occasional bone fragments that irritate the hip

cartilage, and Celebrex has been a real godsend in combating that pain,

which is really excruciating.

Second, I've used plasters with a bit of success. I like Tiger Balm

plasters, which I apply kind of in a circle around the hip joint and

pelvis. Awkward, kind of annoying, but the feeling is worth it.

I find when my hips are flaring up that there is really no position that is

truly comfortable. Lying down is the worst; standing is not really

possible. Sitting is the best I can do, since my hips seem to resent that

position the least. Of course sitting on something soft.

I don't have any long-term solutions. A new doctor I saw recently said

that she was stunned I wasn't on any medications for my osteopenia, but I

don't know what medications those might be. Ultimately I will probably

have arthroscopic surgery to remove the fragments of bone, but in the

meantime I've used these remedies with at least some success. I don't know

how much my pain is related to FMS and how much to osteopenia, but even

with the flu I always have intense hip joint pain. It's a bad place for me.

Best,

Em

~~~~~~~~~~~~~

" Even in nice Mr. son's stories, each boy's life only catches

your deepest interest when a pirate is about to slit that sweet child's

throat. What makes a story good ain't what makes a person good. "

(Allan Gurganus)

" Cut a good story anywhere, and it will bleed. "

(Anton Chekhov)

~~~~~~~~~~~~~

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At 06:34 PM 05/13/2002 +0000, achyfl wrote:

>

> >I can't

> > stand this, what do you girls do for the pain? Yes I am on alot

>of

> > meds but I can't stand to sit, stand or lay.

I have osteopenia (bone loss) in my hips due to many years of ballet, and

had a spontaneous cervical fracture 2 years ago. I've found a couple of

things that help with the pretty constant ache. First, Celebrex keeps the

inflammation down. I have occasional bone fragments that irritate the hip

cartilage, and Celebrex has been a real godsend in combating that pain,

which is really excruciating.

Second, I've used plasters with a bit of success. I like Tiger Balm

plasters, which I apply kind of in a circle around the hip joint and

pelvis. Awkward, kind of annoying, but the feeling is worth it.

I find when my hips are flaring up that there is really no position that is

truly comfortable. Lying down is the worst; standing is not really

possible. Sitting is the best I can do, since my hips seem to resent that

position the least. Of course sitting on something soft.

I don't have any long-term solutions. A new doctor I saw recently said

that she was stunned I wasn't on any medications for my osteopenia, but I

don't know what medications those might be. Ultimately I will probably

have arthroscopic surgery to remove the fragments of bone, but in the

meantime I've used these remedies with at least some success. I don't know

how much my pain is related to FMS and how much to osteopenia, but even

with the flu I always have intense hip joint pain. It's a bad place for me.

Best,

Em

~~~~~~~~~~~~~

" Even in nice Mr. son's stories, each boy's life only catches

your deepest interest when a pirate is about to slit that sweet child's

throat. What makes a story good ain't what makes a person good. "

(Allan Gurganus)

" Cut a good story anywhere, and it will bleed. "

(Anton Chekhov)

~~~~~~~~~~~~~

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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 Ruth

Sent: Saturday, June 24, 2006 5:37

PM

To: 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 luch

Ruth

-- 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?

>

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Marla I have a lot of hip pain and leg pain especially at night the best way I can describe it is that it feels like a dull drill is trying to make a hole in my hip.. It hurt really bad at night and it wakes me up too, I am almost immobile sometimes if I lay still too long.

-- RE: HIP pain

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?>

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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

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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

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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

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Yeah, I had x-rays a year ago in my hips and they said it just showed arthritis, but dang if that's arthritis, I hope I don't get anything else there.. yikes

-- RE: HIP pain

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?>

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Yeah, I had x-rays a year ago in my hips and they said it just showed arthritis, but dang if that's arthritis, I hope I don't get anything else there.. yikes

-- RE: HIP pain

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?>

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Yeah, I had x-rays a year ago in my hips and they said it just showed arthritis, but dang if that's arthritis, I hope I don't get anything else there.. yikes

-- RE: HIP pain

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?>

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,

You

described it perfectly, I have it in the same thigh as well, deep like the hip,

and just recently in the same side left, heel. Have you had any x-rays, I wonder

if I should?

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of

Sent: Sunday, June 25, 2006 4:13

PM

To: Neurosarcoidosis

Subject: RE:

HIP pain

Marla I have a lot of hip pain and leg pain

especially at night the best way I can describe it is that it feels like a

dull drill is trying to make a hole in my hip.. It hurt really bad at night

and it wakes me up too, I am almost immobile sometimes if I lay still

too long.

-- 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 luch

Ruth

-- 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?

>

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,

You

described it perfectly, I have it in the same thigh as well, deep like the hip,

and just recently in the same side left, heel. Have you had any x-rays, I wonder

if I should?

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of

Sent: Sunday, June 25, 2006 4:13

PM

To: Neurosarcoidosis

Subject: RE:

HIP pain

Marla I have a lot of hip pain and leg pain

especially at night the best way I can describe it is that it feels like a

dull drill is trying to make a hole in my hip.. It hurt really bad at night

and it wakes me up too, I am almost immobile sometimes if I lay still

too long.

-- 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 luch

Ruth

-- 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?

>

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,

You

described it perfectly, I have it in the same thigh as well, deep like the hip,

and just recently in the same side left, heel. Have you had any x-rays, I wonder

if I should?

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of

Sent: Sunday, June 25, 2006 4:13

PM

To: Neurosarcoidosis

Subject: RE:

HIP pain

Marla I have a lot of hip pain and leg pain

especially at night the best way I can describe it is that it feels like a

dull drill is trying to make a hole in my hip.. It hurt really bad at night

and it wakes me up too, I am almost immobile sometimes if I lay still

too long.

-- 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 luch

Ruth

-- 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?

>

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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.

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