Re: Re: How do we get sarc??...to Tracie

[Guest guest]

, What treatment plan are you on?...... S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).

From: <bbwtabbie (AT) yahoo (DOT) com>Subject: Re: How do we get sarc??...to Tracie

To: Neurosarcoidosis@ yahoogroups. comDate: Monday, September 22, 2008, 12:55 AM

Tracie,

I truly believe this is in the gene pool. I was adopted at birth, but met my birth mother and birth father in 2002. My birth grandmother on my mother's side had Lupus for many years and then died of ALS (is ALS an AI disease?). My birth father has adult-onset diabetes. But I truly think this comes to me from the genes in my birth mother's family. I never worked in any medical field, but I was always sick with respiratory & sinus infections, and I was a smoker up until 4 yrs ago. I worked in many different office buildings in the accounting field. It will really be interesting to find out how we contracted this nasty disease if they are ever able to figure it out.

I was dx'd with NS in Dec., 2006. I have now started Remicade infusions and we are slowly reducing the Pred...now down to 20mg per day. I have had 3 Remicade infusions, and have mostly noticed an improvement with the banding pain I had been having daily. Other than that, I think the Remicade is compensating for the drop in the Pred, because I haven't really noticed many other improvements.

Have the owners and moderators of this site ever thought of having each of us fill out a survey to compare our symptoms and backgrounds and ages contracted, etc.? I know it would be a big job. I have often read messages from different people and wondered what they were dx'd with, the age of dx, their symptoms, their current age, treatments tried and what worked and what didn't. Whenever I tell my mom about something I've read on the website, she asks how old the person is and where they have NS, where they live, etc. I guess I'm just as curious as she is.

Well, as always, thanks for the info.

Hugs,

in UT

> > From: tracie feldhaus <tiodaat2001@ yahoo.com>

> Subject: Re: pain question>

To: Neurosarcoidosis@ yahoogroups. com> Date: Thursday, September 18, 2008, 4:25 PM> > > Hi ,> It is so sad that a 10yo child has sarcoidosis- - and yes, this sounds like the neuropathy that goes along with it.

> What kind of meds do his doctors have him on? Are you here in the States? Do you have a pediatrician that knows about sarcoidosis taking care of him? > My heart goes out to the both of you, I can't imagine the challenges that as a mom you are going through. I do hope that he has a good Rheumatologist and Neurologist to help with this. I know they treat kids with the BRM's-- Biological Response Modifiers - Enbrel, Humira and Remicade.

> I think one of the biggest challenges is that even though this is an autoimmune disease, the immune system attacking itself- even the healthy tissues are seen as something to attack, that we have to keep in mind

that since our immune systems are overactive, the immunosuppressants are bringing them back i!

nto a "n

ormal" stasis-- and not adopt the mindset that the immune system is going to be blown out entirely. > I do hope that you will contact Om Sharma, M.D. at USC- LA-- and get his opinion. He is great about answering emails, and can be reached at www.sarcoidosisshar ma.com. He may have you get your son's doctors to email him with their questions, but you will get a response.

> Most sincerely,> Tracie> NS Co-owner/moderator> > > > pain question> > > My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has > recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he

>

feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last > night just for that.> > He says, "when did I burn my arm?" There is no discoloration. Does this sound like

> sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid > stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does > have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin

> pain. Thanks for any answers,> >

[Guest guest]

Marla, my mom is possibly going to be going to NJH in Oct so if so we would love to stop by and visit again. MattI for one am not working for the drug companies, if I was maybe I could get these drugs free:)and I cannot wait to get back on Remicade, I have been off all meds for 2 months now and am going down hill. Every drug is dangerous, it just depends on who and what is being treated. Some of us need these drugs and are far better off on them then off. Let me share a story with you, I have an Aunt with Scleraderma, very debilitating disease, she was on a drug much like the ones being discussed and yes she did get lymphoma from the drug, so she was treated with Chemo for the lymphoma, she is now cancer free and her scleraderma is in remission for the first time in 30 years, she can do more now then she can remember. and even the Chemo drugs that treat cancer can cause cancer, butthere are times when we just need to take a chance, so that we can live a better life. There is a place and time for everything, Marla On Tue, Sep 23, 2008 at 4:58 AM, RICHARD BASS <angel21825 (AT) sbcglobal (DOT) net>wrote:, you seem to be encouraging Remicade,Embrel, Humira, it looks like my emial was changed to someone. To all parents, these drugs are very dangerous, try to email me,I will speak with you personally. These drugs will possibly cause permanent damage or death, it completely shuts down the immune system, no way, I believe the moderatorsare working for drug companies, From: <bbwtabbie (AT) yahoo (DOT) com>Subject: Re: How do we get sarc??...to TracieTo: Neurosarcoidosis Date: Monday, September 22, 2008, 12:55 AMTracie,I truly believe this is in the gene pool. I was adopted at birth, but met my birth mother and birth father in 2002. My birth grandmother on my mother's side had Lupus for many years and then died of ALS (is ALS an AI disease?). My birth father has adult-onset diabetes. But I truly think this comes to me from the genes in my birth mother's family. I never worked in any medical field, but I was always sick with respiratory & sinus infections, and I was a smoker up until 4 yrs ago. I worked in many different office buildings in the accounting field. It will really be interesting to find out how we contracted this nasty disease if they are ever able to figure it out.I was dx'd with NS in Dec., 2006. I have now started Remicade infusions and we are slowly reducing the Pred...now down to 20mg per day. I have had 3 Remicade infusions, and have mostly noticed an improvement with the banding pain I had been having daily. Other than that, I think the Remicade is compensating for the drop in the Pred, because I haven't really noticed many other improvements.Have the owners and moderators of this site ever thought of having each of us fill out a survey to compare our symptoms and backgrounds and ages contracted, etc.? I know it would be a big job. I have often read messages from different people and wondered what they were dx'd with, the age of dx, their symptoms, their current age, treatments tried and what worked and what didn't. Whenever I tell my mom about something I've read on the website, she asks how old the person is and where they have NS, where they live, etc. I guess I'm just as curious as she is.Well, as always, thanks for the info.Hugs, in UT> > From: tracie feldhaus <tiodaat2001@ yahoo.com>> Subject: Re: pain question> To: Neurosarcoidosis@ yahoogroups. com> Date: Thursday, September 18, 2008, 4:25 PM> > > Hi ,> It is so sad that a 10yo child has sarcoidosis- - and yes, this sounds like the neuropathy that goes along with it. > What kind of meds do his doctors have him on? Are you here in the States? Do you have a pediatrician that knows about sarcoidosis taking care of him? > My heart goes out to the both of you, I can't imagine the challenges that as a mom you are going through. I do hope that he has a good Rheumatologist and Neurologist to help with this. I know they treat kids with the BRM's-- Biological Response Modifiers - Enbrel, Humira and Remicade. > I think one of the biggest challenges is that even though this is an autoimmune disease, the immune system attacking itself- even the healthy tissues are seen as something to attack, that we have to keep in mind that since our immune systems are overactive, the immunosuppressants are bringing them back i! nto a "n ormal" stasis-- and not adopt the mindset that the immune system is going to be blown out entirely. > I do hope that you will contact Om Sharma, M.D. at USC- LA-- and get his opinion. He is great about answering emails, and can be reached at www.sarcoidosisshar ma.com. He may have you get your son's doctors to email him with their questions, but you will get a response.> Most sincerely,> Tracie> NS Co-owner/moderator> > > > pain question> > > My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has > recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he > feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last > night just for that.> > He says, "when did I burn my arm?" There is no discoloration. Does this sound like > sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid > stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does > have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin > pain. Thanks for any answers,> >

[Guest guest]

Matt would love to see you, let me know when you're coming through. Marla

Marla, my mom is possibly going to be going to NJH in Oct so if so we would love to stop by and visit again. Matt

I for one am not working for the drug companies, if I was maybe I could get these drugs free:)

and I cannot wait to get back on Remicade, I have been off all meds for 2 months now and am going down hill. Every drug is dangerous, it just depends on who and what is being

treated. Some of us need these drugs and are far better off on them then off. Let me share a story with you, I have an Aunt with Scleraderma, very debilitating disease,

she was on a drug much like the ones being discussed and yes she did get lymphoma from the drug, so she was treated with Chemo for the lymphoma, she is now cancer free and

her scleraderma is in remission for the first time in 30 years, she can do more now then she can remember. and even the Chemo drugs that treat cancer can cause cancer, but

there are times when we just need to take a chance, so that we can live a better life. There is a place and time for everything,

Marla On Tue, Sep 23, 2008 at 4:58 AM, RICHARD BASS wrote:

, you seem to be encouraging Remicade,Embrel, Humira, it looks like my emial was changed to someone. To all parents, these drugs are very dangerous, try to email me,

I will speak with you personally. These drugs will possibly cause permanent damage or death, it completely shuts down the immune system, no way, I believe the moderatorsare working for drug companies,

Subject: Re: How do we get sarc??...to TracieTo: Neurosarcoidosis

Date: Monday, September 22, 2008, 12:55 AMTracie,I truly believe this is in the gene pool. I was adopted at birth, but met my birth mother and birth father in 2002. My birth grandmother on my mother's side had Lupus for many years and then died of ALS (is ALS an AI disease?). My birth father has adult-onset diabetes. But I truly think this comes to me from the genes in my birth mother's family. I never worked in any medical field, but I was always sick with respiratory & sinus infections, and I was a smoker up until 4 yrs ago. I worked in many different office buildings in the accounting field. It will really be interesting to find out how we contracted this nasty disease if they are ever able to figure it out.

I was dx'd with NS in Dec., 2006. I have now started Remicade infusions and we are slowly reducing the Pred...now down to 20mg per day. I have had 3 Remicade infusions, and have mostly noticed an improvement with the banding pain I had been having daily. Other than that, I think the Remicade is compensating for the drop in the Pred, because I haven't really noticed many other improvements.

Have the owners and moderators of this site ever thought of having each of us fill out a survey to compare our symptoms and backgrounds and ages contracted, etc.? I know it would be a big job. I have often read messages from different people and wondered what they were dx'd with, the age of dx, their symptoms, their current age, treatments tried and what worked and what didn't. Whenever I tell my mom about something I've read on the website, she asks how old the person is and where they have NS, where they live, etc. I guess I'm just as curious as she is.

Well, as always, thanks for the info.Hugs, in UT

> > From: tracie feldhaus <tiodaat2001@ yahoo.com>

> Subject: Re: pain question> To: Neurosarcoidosis@ yahoogroups. com> Date: Thursday, September 18, 2008, 4:25 PM> > > Hi ,> It is so sad that a 10yo child has sarcoidosis- - and yes, this sounds like the neuropathy that goes along with it.

> What kind of meds do his doctors have him on? Are you here in the States? Do you have a pediatrician that knows about sarcoidosis taking care of him? > My heart goes out to the both of you, I can't imagine the challenges that as a mom you are going through. I do hope that he has a good Rheumatologist and Neurologist to help with this. I know they treat kids with the BRM's-- Biological Response Modifiers - Enbrel, Humira and Remicade.

> I think one of the biggest challenges is that even though this is an autoimmune disease, the immune system attacking itself- even the healthy tissues are seen as something to attack, that we have to keep in mind that since our immune systems are overactive, the immunosuppressants are bringing them back i! nto a " n ormal " stasis-- and not adopt the mindset that the immune system is going to be blown out entirely.

> I do hope that you will contact Om Sharma, M.D. at USC- LA-- and get his opinion. He is great about answering emails, and can be reached at www.sarcoidosisshar ma.com. He may have you get your son's doctors to email him with their questions, but you will get a response.

> Most sincerely,> Tracie> NS Co-owner/moderator> > > > pain question> > > My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has

> recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he > feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last

> night just for that.> > He says, " when did I burn my arm? " There is no discoloration. Does this sound like > sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid

> stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does > have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin

> pain. Thanks for any answers,> >