Re: Maybe someone would have some advice....

May 15, 2006

Wow, Ida. You guys have really been through the mill. I got confused (actually, I go through life pretty much "dazed and confused") about your husband's diagnosis. Did one of his doctors bring up sarc or neurosarc? Did you find it by looking up his symptoms?

Has he been back to the Cleveland Clinic since that time in 1999? That may be the best option, so that somebody can start putting all these puzzle pieces together. Doctors don't often communicate with each other very well, so you have different docs doing different tests & treatments, but nobody looking at the big picture. Sarcoidosis is usually diagnosed by a biopsy of affected tissue. In my case I first had a positive lymph node biopsy in 1994, then a positive lung biopsy in 2002. In between I lost much of my hearing, had a couple of facial nerve palsies, started having other neurological & systemic problems & was given a definite diagnosis of neurosarc in 2002. There are many folks, including many on this list, who have signs & symptoms consistent with neurosarc, other disorders have been ruled out, but because they don't have a biopsy showing sarcoidosis, their doctors won't treat them.

Chronic illness is a terrible thing to go through, and your husband's experience is not unusual. His depression & feeling a loss of his manhood are shared by many. I'm glad that you are taking an active role in trying to help him. Do you have family or friends that you can lean on? It's tough being the caregiver, plus trying to keep the family running. 4 teens! Yikes!

I know that others will respond to your message. Most of us are in varying stages of illness, so don't give up if it takes a couple of days for people to respond.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Maybe someone would have some advice....Date: Tue, 16 May 2006 01:06:44 -0000I am Ida a married mother of 4 teenagers my husband is Ken he is 38 been mostly healthy his life we have been together 19 yrs married for 16.the thing is when he was 12 he broke his arm and a cyst was discovered on lower forearm it was said to be non cancerous and thats all that was said.In 1998 he was in a truck accident at work and he had some pain.We had just bought a nice house everything was looking up.in 99 the pain got worse he was sent to Cleveland clinic here in Ohio diagnosed with osteoartheritus and fibromyalsia.Finally in 2000 he got a job driving truck with his uncle and the pain let up some.Then in 2003 he started getting pain alot again in left Arm,hand shoulder,around shoulder blades and sometimes chest pains made a few trips to ER to rule out heart attack.He missed alot of work due to pain then depression started kicking in.h has been in pain for years now but as of Dec 04 when he went to get into bed his shoulder popped very loudly.Drs couldnt find anything except bones are deformed and some blood works come back abnormal.Sent him to a surgeon in Dayton Ohio who diagnosed him with pagents disease he had surgery to remove some bone from elbow because joint was crowded,and artheritus scrapped from shoulder.I did my research and discovered that there was alot more benificial things than just the vicodin the dr was giving him to treat it so I talked to family Dr and he sent us to a cancer Dr who put him on Aridia IV theraphy to strengthen bones.helped some but not to much so they sent him to another dr and another so far drs have said they think its pagents even though blood work dont show and Artheritus,Fibromyalsia,emphazema,heartburn Reflux problems and now Sarcoidosis.I was doing reading on it and some symptoms are Chest pain,spots on skin,fatigue,depression,joint pain, only things I didnt notice him having was enlarged liver or any kidney problems.He was off work all but 3 months last year and hasnt worked at all since july he has applied for disability.unable to go to kids plays or sporting event cant sit very long.he now has MAJOR DEPRESSION.They have him on Wellbutrin for it and Oxycotin40 mg 2xs daily,hydromorphone 12 mg every 3-4 hrs,amitriptoline 75 mg,some over the counter joint medication.he applied for social security last yr and dec it was denied they said he can work doing light duty all 14 drs he has saw in past year say he cant work using left arm at all EVER and cant till they get pain and depression under controle.So we are appealing.it has been so rough lately on Easter he tooka overdose.luckily got a ambulance and to hospital in time it didnt do any damage.he said he is tired of being in pain feels nobody beleives him,he dont feel like a father anymore or a husband since he is on such strong meds and in such pain about the only thing he can do anymore is lay on couch.Sexlife is gone,he cant drive anymore,he didnt go with us to fair last year,cant go camping,dont play cards or hang out with friends anymore because he cant stand to be around people anymore,he has always been so sweet and loving and now he snaps at everything....What are some of the best ways to be diagnosed with this?the patches he has looks almost like a bright red rash mostly on his face.This is really starting to tear us apart in every way.We are located in NW Ohio~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

May 16, 2006

The Dr said on his report I am particularly concerd about sarcoidosis involving the bone (elevatedACE) He has had a bone byopsy on his hip checking for bone cancer,MRI's,Bone scans,blood test and X Rays galore...Havent been to Cleveland clinic since mainly because I hate driving in big towns And no Dr has Refered him there our family Dr has been very good with refering him wherever I want him to go that will take our insurance.I am lucky for 1 thing I do have a job where I can take off whenever i need to for his appts but I am only working 16hrs a week.ken just started a program at the hospital here where he gets pain management skills and such,told me last night they want him to start lifting weights and stuff today,Dr who sent him there said he dont want him using left arm at all,and is on vacation till next week.it is starting to really get to me I get up in the morning take kids to school at 3 different schools go to work at 830-12 short break in between clients I am a

Home health Aid,then Start picking kids up from school 145,330 and 4pm.Then run me ragged.We live in Lima Ohio for U that dont know where its at its right between Dayton and toledo.Besides everything else I do I am planning on going back to school may 30th full time for 3 weeks so I can get a better paying job with more hrs......Should the bone byopsy of showed this? IdaRose wrote: Wow, Ida. You guys have really been through the mill. I got confused (actually, I go through life pretty much "dazed and confused") about your husband's diagnosis. Did one of his doctors bring up sarc or neurosarc? Did you find it by looking up his symptoms? Has he been back to the Cleveland Clinic since that time in 1999? That may be the best

option, so that somebody can start putting all these puzzle pieces together. Doctors don't often communicate with each other very well, so you have different docs doing different tests & treatments, but nobody looking at the big picture. Sarcoidosis is usually diagnosed by a biopsy of affected tissue. In my case I first had a positive lymph node biopsy in 1994, then a positive lung biopsy in 2002. In between I lost much of my hearing, had a couple of facial nerve palsies, started having other neurological & systemic problems & was given a definite diagnosis of neurosarc in 2002. There are many folks, including many on this list, who have signs & symptoms consistent with neurosarc, other disorders have been ruled out, but because they don't have a biopsy showing sarcoidosis, their doctors won't treat them. Chronic illness is a terrible thing to go through, and your husband's experience is not

unusual. His depression & feeling a loss of his manhood are shared by many. I'm glad that you are taking an active role in trying to help him. Do you have family or friends that you can lean on? It's tough being the caregiver, plus trying to keep the family running. 4 teens! Yikes! I know that others will respond to your message. Most of us are in varying stages of illness, so don't give up if it takes a couple of days for people to respond. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Maybe someone would have some advice....Date: Tue, 16 May 2006 01:06:44 -0000I am Ida a married mother of 4 teenagers my husband is Ken he is 38 been mostly healthy his life we have been together 19 yrs married for 16.the thing is when he was 12 he broke his arm and a cyst was discovered on lower forearm it was said to be non cancerous and thats all that was said.In 1998 he was in a truck accident at work and he had some pain.We had just bought a nice house everything was looking up.in 99 the pain got worse he was sent to Cleveland clinic here in Ohio diagnosed with osteoartheritus and fibromyalsia.Finally in 2000 he got a job driving truck with his uncle and the pain let

up some.Then in 2003 he started getting pain alot again in left Arm,hand shoulder,around shoulder blades and sometimes chest pains made a few trips to ER to rule out heart attack.He missed alot of work due to pain then depression started kicking in.h has been in pain for years now but as of Dec 04 when he went to get into bed his shoulder popped very loudly.Drs couldnt find anything except bones are deformed and some blood works come back abnormal.Sent him to a surgeon in Dayton Ohio who diagnosed him with pagents disease he had surgery to remove some bone from elbow because joint was crowded,and artheritus scrapped from shoulder.I did my research and discovered that there was alot more benificial things than just the vicodin the dr was giving him to treat it so I talked to family Dr and he sent us to a cancer Dr who put him on Aridia IV theraphy to strengthen bones.helped some but not to much so they sent him to

another dr and another so far drs have said they think its pagents even though blood work dont show and Artheritus,Fibromyalsia,emphazema,heartburn Reflux problems and now Sarcoidosis.I was doing reading on it and some symptoms are Chest pain,spots on skin,fatigue,depression,joint pain, only things I didnt notice him having was enlarged liver or any kidney problems.He was off work all but 3 months last year and hasnt worked at all since july he has applied for disability.unable to go to kids plays or sporting event cant sit very long.he now has MAJOR DEPRESSION.They have him on Wellbutrin for it and Oxycotin40 mg 2xs daily,hydromorphone 12 mg every 3-4 hrs,amitriptoline 75 mg,some over the counter joint medication.he applied for social security last yr and dec it was denied they said he can work doing light duty all 14 drs he has saw in past year say he cant work using left arm at all EVER and cant till they get pain

and depression under controle.So we are appealing.it has been so rough lately on Easter he tooka overdose.luckily got a ambulance and to hospital in time it didnt do any damage.he said he is tired of being in pain feels nobody beleives him,he dont feel like a father anymore or a husband since he is on such strong meds and in such pain about the only thing he can do anymore is lay on couch.Sexlife is gone,he cant drive anymore,he didnt go with us to fair last year,cant go camping,dont play cards or hang out with friends anymore because he cant stand to be around people anymore,he has always been so sweet and loving and now he snaps at everything....What are some of the best ways to be diagnosed with this?the patches he has looks almost like a bright red rash mostly on his face.This is really starting to tear us apart in every way.We are located in NW Ohio~~~~ *** ~~~ *** ~~~ *** ~~~~The

Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

May 16, 2006

The Dr said on his report I am particularly concerd about sarcoidosis involving the bone (elevatedACE) He has had a bone byopsy on his hip checking for bone cancer,MRI's,Bone scans,blood test and X Rays galore...Havent been to Cleveland clinic since mainly because I hate driving in big towns And no Dr has Refered him there our family Dr has been very good with refering him wherever I want him to go that will take our insurance.I am lucky for 1 thing I do have a job where I can take off whenever i need to for his appts but I am only working 16hrs a week.ken just started a program at the hospital here where he gets pain management skills and such,told me last night they want him to start lifting weights and stuff today,Dr who sent him there said he dont want him using left arm at all,and is on vacation till next week.it is starting to really get to me I get up in the morning take kids to school at 3 different schools go to work at 830-12 short break in between clients I am a

Home health Aid,then Start picking kids up from school 145,330 and 4pm.Then run me ragged.We live in Lima Ohio for U that dont know where its at its right between Dayton and toledo.Besides everything else I do I am planning on going back to school may 30th full time for 3 weeks so I can get a better paying job with more hrs......Should the bone byopsy of showed this? IdaRose wrote: Wow, Ida. You guys have really been through the mill. I got confused (actually, I go through life pretty much "dazed and confused") about your husband's diagnosis. Did one of his doctors bring up sarc or neurosarc? Did you find it by looking up his symptoms? Has he been back to the Cleveland Clinic since that time in 1999? That may be the best

option, so that somebody can start putting all these puzzle pieces together. Doctors don't often communicate with each other very well, so you have different docs doing different tests & treatments, but nobody looking at the big picture. Sarcoidosis is usually diagnosed by a biopsy of affected tissue. In my case I first had a positive lymph node biopsy in 1994, then a positive lung biopsy in 2002. In between I lost much of my hearing, had a couple of facial nerve palsies, started having other neurological & systemic problems & was given a definite diagnosis of neurosarc in 2002. There are many folks, including many on this list, who have signs & symptoms consistent with neurosarc, other disorders have been ruled out, but because they don't have a biopsy showing sarcoidosis, their doctors won't treat them. Chronic illness is a terrible thing to go through, and your husband's experience is not

unusual. His depression & feeling a loss of his manhood are shared by many. I'm glad that you are taking an active role in trying to help him. Do you have family or friends that you can lean on? It's tough being the caregiver, plus trying to keep the family running. 4 teens! Yikes! I know that others will respond to your message. Most of us are in varying stages of illness, so don't give up if it takes a couple of days for people to respond. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Maybe someone would have some advice....Date: Tue, 16 May 2006 01:06:44 -0000I am Ida a married mother of 4 teenagers my husband is Ken he is 38 been mostly healthy his life we have been together 19 yrs married for 16.the thing is when he was 12 he broke his arm and a cyst was discovered on lower forearm it was said to be non cancerous and thats all that was said.In 1998 he was in a truck accident at work and he had some pain.We had just bought a nice house everything was looking up.in 99 the pain got worse he was sent to Cleveland clinic here in Ohio diagnosed with osteoartheritus and fibromyalsia.Finally in 2000 he got a job driving truck with his uncle and the pain let

up some.Then in 2003 he started getting pain alot again in left Arm,hand shoulder,around shoulder blades and sometimes chest pains made a few trips to ER to rule out heart attack.He missed alot of work due to pain then depression started kicking in.h has been in pain for years now but as of Dec 04 when he went to get into bed his shoulder popped very loudly.Drs couldnt find anything except bones are deformed and some blood works come back abnormal.Sent him to a surgeon in Dayton Ohio who diagnosed him with pagents disease he had surgery to remove some bone from elbow because joint was crowded,and artheritus scrapped from shoulder.I did my research and discovered that there was alot more benificial things than just the vicodin the dr was giving him to treat it so I talked to family Dr and he sent us to a cancer Dr who put him on Aridia IV theraphy to strengthen bones.helped some but not to much so they sent him to

another dr and another so far drs have said they think its pagents even though blood work dont show and Artheritus,Fibromyalsia,emphazema,heartburn Reflux problems and now Sarcoidosis.I was doing reading on it and some symptoms are Chest pain,spots on skin,fatigue,depression,joint pain, only things I didnt notice him having was enlarged liver or any kidney problems.He was off work all but 3 months last year and hasnt worked at all since july he has applied for disability.unable to go to kids plays or sporting event cant sit very long.he now has MAJOR DEPRESSION.They have him on Wellbutrin for it and Oxycotin40 mg 2xs daily,hydromorphone 12 mg every 3-4 hrs,amitriptoline 75 mg,some over the counter joint medication.he applied for social security last yr and dec it was denied they said he can work doing light duty all 14 drs he has saw in past year say he cant work using left arm at all EVER and cant till they get pain

and depression under controle.So we are appealing.it has been so rough lately on Easter he tooka overdose.luckily got a ambulance and to hospital in time it didnt do any damage.he said he is tired of being in pain feels nobody beleives him,he dont feel like a father anymore or a husband since he is on such strong meds and in such pain about the only thing he can do anymore is lay on couch.Sexlife is gone,he cant drive anymore,he didnt go with us to fair last year,cant go camping,dont play cards or hang out with friends anymore because he cant stand to be around people anymore,he has always been so sweet and loving and now he snaps at everything....What are some of the best ways to be diagnosed with this?the patches he has looks almost like a bright red rash mostly on his face.This is really starting to tear us apart in every way.We are located in NW Ohio~~~~ *** ~~~ *** ~~~ *** ~~~~The

Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

May 16, 2006

Ida To my knowledge, my bone marrow biopsy (they thought I had lymphoma) did not show the sarc, but a biopsy on a different part most definitely did. Please take care of yourself, or your body will rebel soon if it doesn't get it's own care and downtime. There is nothing wrong with taking some time for you, and it will benefit your family in the long run. (By time for you I don't mean work or school). I'm sorry it's such a hassle driving uptown, but eventually your husband will probably need much more than a family practitioner, not necessarily because things will get worse, but to get answers and more effective treatment for what's going on now. Take care, your family is in my prayers. Thank you for being a wonderful person, I dare say that all of us in this group have people like you that we depend on very much, and

appreciate even more./////ConnieIda Morlock wrote: The Dr said on his report I am particularly concerd about sarcoidosis involving the bone (elevatedACE) He has had a bone byopsy on his hip checking for bone cancer,MRI's,Bone scans,blood test and X Rays galore...Havent been to Cleveland clinic since mainly because I hate driving in big towns And no Dr has Refered him there our family Dr has been very good with refering him wherever I want him to go that will take our insurance.I am lucky for 1 thing I do have a job where I can take off whenever i need to for his appts but I am only working 16hrs a week.ken just started a program at the hospital here where he gets pain management skills and such,told me last night they want him to start lifting weights and stuff today,Dr who sent him there said he dont want him

using left arm at all,and is on vacation till next week.it is starting to really get to me I get up in the morning take kids to school at 3 different schools go to work at 830-12 short break in between clients I am a Home health Aid,then Start picking kids up from school 145,330 and 4pm.Then run me ragged.We live in Lima Ohio for U that dont know where its at its right between Dayton and toledo.Besides everything else I do I am planning on going back to school may 30th full time for 3 weeks so I can get a better paying job with more hrs......Should the bone byopsy of showed this? IdaRose wrote: Wow, Ida. You guys have really been through the mill. I got confused (actually, I go through life pretty much "dazed and confused") about your husband's diagnosis. Did one

of his doctors bring up sarc or neurosarc? Did you find it by looking up his symptoms? Has he been back to the Cleveland Clinic since that time in 1999? That may be the best option, so that somebody can start putting all these puzzle pieces together. Doctors don't often communicate with each other very well, so you have different docs doing different tests & treatments, but nobody looking at the big picture. Sarcoidosis is usually diagnosed by a biopsy of affected tissue. In my case I first had a positive lymph node biopsy in 1994, then a positive lung biopsy in 2002. In between I lost much of my hearing, had a couple of facial nerve palsies, started having other neurological & systemic problems & was given a definite diagnosis of neurosarc in 2002. There are many folks, including many on this list, who have signs & symptoms consistent with neurosarc, other disorders have been ruled

out, but because they don't have a biopsy showing sarcoidosis, their doctors won't treat them. Chronic illness is a terrible thing to go through, and your husband's experience is not unusual. His depression & feeling a loss of his manhood are shared by many. I'm glad that you are taking an active role in trying to help him. Do you have family or friends that you can lean on? It's tough being the caregiver, plus trying to keep the family running. 4 teens! Yikes! I know that others will respond to your message. Most of us are in varying stages of illness, so don't give up if it takes a couple of days for people to respond. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Maybe someone would have some advice....Date: Tue, 16 May 2006 01:06:44 -0000I am Ida a married mother of 4 teenagers my husband is Ken he is 38 been mostly healthy his life we have been together 19 yrs married for 16.the thing is when he was 12 he broke his arm and a cyst was discovered on lower forearm it was said to be non cancerous and thats all that was said.In 1998 he was in a truck accident at work and he had some pain.We had just bought a nice house

everything was looking up.in 99 the pain got worse he was sent to Cleveland clinic here in Ohio diagnosed with osteoartheritus and fibromyalsia.Finally in 2000 he got a job driving truck with his uncle and the pain let up some.Then in 2003 he started getting pain alot again in left Arm,hand shoulder,around shoulder blades and sometimes chest pains made a few trips to ER to rule out heart attack.He missed alot of work due to pain then depression started kicking in.h has been in pain for years now but as of Dec 04 when he went to get into bed his shoulder popped very loudly.Drs couldnt find anything except bones are deformed and some blood works come back abnormal.Sent him to a surgeon in Dayton Ohio who diagnosed him with pagents disease he had surgery to remove some bone from elbow because joint was crowded,and artheritus scrapped from shoulder.I did my research and discovered that there was alot more benificial

things than just the vicodin the dr was giving him to treat it so I talked to family Dr and he sent us to a cancer Dr who put him on Aridia IV theraphy to strengthen bones.helped some but not to much so they sent him to another dr and another so far drs have said they think its pagents even though blood work dont show and Artheritus,Fibromyalsia,emphazema,heartburn Reflux problems and now Sarcoidosis.I was doing reading on it and some symptoms are Chest pain,spots on skin,fatigue,depression,joint pain, only things I didnt notice him having was enlarged liver or any kidney problems.He was off work all but 3 months last year and hasnt worked at all since july he has applied for disability.unable to go to kids plays or sporting event cant sit very long.he now has MAJOR DEPRESSION.They have him on Wellbutrin for it and Oxycotin40 mg 2xs daily,hydromorphone 12 mg every 3-4 hrs,amitriptoline 75 mg,some over the counter

joint medication.he applied for social security last yr and dec it was denied they said he can work doing light duty all 14 drs he has saw in past year say he cant work using left arm at all EVER and cant till they get pain and depression under controle.So we are appealing.it has been so rough lately on Easter he tooka overdose.luckily got a ambulance and to hospital in time it didnt do any damage.he said he is tired of being in pain feels nobody beleives him,he dont feel like a father anymore or a husband since he is on such strong meds and in such pain about the only thing he can do anymore is lay on couch.Sexlife is gone,he cant drive anymore,he didnt go with us to fair last year,cant go camping,dont play cards or hang out with friends anymore because he cant stand to be around people anymore,he has always been so sweet and loving and now he snaps at everything....What are some of the best ways to be diagnosed with

this?the patches he has looks almost like a bright red rash mostly on his face.This is really starting to tear us apart in every way.We are located in NW Ohio~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

May 16, 2006