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

[Guest guest]

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 into a "normal" 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]

, 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 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]

,

I know it is not my place to speak for Tracie, but she is giving

information on what is currently available to us. This is what our

great medical community offers.....Tracie also recommends lots of

supplements and goes out of her way to gather the most up to date info

she can. She and all the moderators care a great deal about everyone

on this site so don't take this info as a commercial for these drugs.

These are all real people trying to help other real people; all who are

sick and hurting.

Terri G.

> >

> > 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]

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

, 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 Tracie

To: Neurosarcoidosis Date: 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]

I do not see to many positive things about how well everyone is doing. How many of you believe REmicade, Humira, or other completely immune suppressing drugs work? How many how side effects? Anyone with children doing well. Then lets talk serious side effects, I would be very careful of advising parents on this. What is the success rate, I willdo more research on these. I have looked at some studies, not good. These drugs costthousand of dollars, just like chemo. Many people die from chemo side effect. Many people get well. But with sarc it is a cell wall deficent bacteria, and this is a whole new world. My neurosurgeon said never ever get these drugs, he refuses to do any surgeries forback or spine, as that person will get an infection, and will never heal. This is very

dangerous for children, or for parents with children. I am 57 so it is not the same. But I know I will catch something, children go to schools, and they will catch something. this disease might even go away, and may can be treated at very first with steroids, but never long term. I am glad you are doing well, and I will be interested to see how others are doing, To parents get two opinions, thank you

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]

, go to the ARCHIVES!!!!

Remicade has been discussed, many many times over. So have the other meds. As far as telling someone to get their kids on it-- reread my email-- I suggested she talk with her Rheumi about this. Preferrably a pediatric Rheumatologist.

We have had only 2 or 3 kids on the site-- that is parents with kids with NS. We now have over 530 members-- so we don't have much research on pediatric issues with sarcoidosis. Since it seems to be a disease that for the most part isn't diagnosed until you are in your 30-50's, and then most will tell you they've dealt with health issues for a lifetime-- but no one told them it was sarc-- even if the docs knew it when they did lung xrays on us as kids (who knows, my GP's seem to think I had it since childhood, but only when I got so I couldn't breath in 1991, was I dx) as during the 60's and 70's it was still (and is still) thought of as a "benign do nothing it'll go away disease" -- did we start to put the puzzle together.

None of this is a new issue with the group. As far as doing studies--- sorry, no energy to partake-- and ACCESS is out there, we have a LINK to it-- so look away. We are VOLUNTEERS-- and we don't have a foundation, or administration, or money or a cost to be a member-- or brochures we charge for, we do this research for YOU for free. We do it for US-- and then pay our docs the big bucks to sort it out-- (they ask us now, because we could all wear the T-shirt that says ALL THAT MODERN MEDICINE KNOWS ABOUT SARCOIDOSIS IS ON THE BACK OF MY SHIRT -and the back of the shirt is blank (Thanks Gardner at FSR) and sadly, a true mantra....

But that being said-- Please, we too are sharing the info we have gleaned, lived through via personal experience, and shared-- tears, laughter, hearts and heartaches--- and just trying to get a handle on life-- with a bit of quality attached.

So NO-- DON'T TAKE MY WORD FOR IT-- THE RESEARCH IS OUT THERE-- AND MUCH OF IT IS IN OUR LINKS AND ARCHIVES -- AND ONCE AGAIN, I WILL SEND THE INFO OUT SO THAT YOU ALL HAVE THE ADDRESSES.

Good, bad and ugly, we're in the boat together-- so help us paddle!

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,> >