attn: U.K. members

[Guest guest]

Hi, . (I have a granddaughter named ; I think it's a lovely name!) I don't recall having anyone else from Ireland in the group, although we do have a few folks from the U.K. I think they are all in England. Is it difficult for you to get to London? I know there are some knowledgeable doctors in that area. Another possibility, if your local doctor is willing, is to collaborate by phone with a sarc specialist. What symptoms do you have from your neurosarc? Are you being seen by a neurologist; any other specialists? With NS, you definitely need combination therapy; at least two drugs. Unfortunately, it's often tricky figuring out the best combo for a particular patient. The first thing most docs would do is add something like Methotrexate (Mtx) or Imuran. That allows you to decrease the dosage of Prednisone while keeping the Sarc Monster at bay. I'm very sorry that you have been attacked by this nasty disease, but there is hope. This group may be the jumping-off place for you to get started on a more effective treatment plan.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: christine.robinson52@...Date: Fri, 8 Oct 2010 13:06:46 -0700Subject: (unknown)

hi. My names christine and I have suffered with neurosarcoidosis for 7 years now. every time i think ive beaten it ,it comes back with a vengance.I live in ireland and this is very rare only 3 or 4 people have it. The only treatment ive every had is steriods the dose going up and down from 60mg till 7mg daily. Was wondering does anyone else find it always gets worse this time of year.

[Guest guest]

Hi Rose . Until i found this group on the net I wasent aware of any other treatments other than prednisolone. Im also on Alendronic Acid and Lansoprazole plus 2 inhalers. I go from one extreme to the other for months I feel not to bad then bang ,legs that ache and feel as if they wont hold me,arms and hands that made me scream if touched, head that I can only discribe as feeling like a dizzy blonde plus eyesight in left eye not good. Although I have not needed a wheel chair for 6 years I ve been close. My weight also is like a yoyo due to the doseage of prednisolone going up and down.

Theres only one neurologist here that deals with neurosarcoidosis and I was his first patient.

Do you know if theres any history of this being hereditory as my mother had sarcoid at 47 the same age as I was when it started?

Thanks again

To: neurosarcoidosis Sent: Mon, October 11, 2010 4:45:36 AMSubject: attn: U.K. members

Hi, . (I have a granddaughter named ; I think it's a lovely name!) I don't recall having anyone else from Ireland in the group, although we do have a few folks from the U.K. I think they are all in England. Is it difficult for you to get to London? I know there are some knowledgeable doctors in that area. Another possibility, if your local doctor is willing, is to collaborate by phone with a sarc specialist. What symptoms do you have from your neurosarc? Are you being seen by a neurologist; any other specialists? With NS, you definitely need combination therapy; at least two drugs. Unfortunately, it's often tricky figuring out the best combo for a particular patient. The first thing most docs would do is add something like Methotrexate (Mtx) or Imuran. That allows you to decrease the dosage of Prednisone while keeping the Sarc Monster at bay. I'm very

sorry that you have been attacked by this nasty disease, but there is hope. This group may be the jumping-off place for you to get started on a more effective treatment plan.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: christine.robinson52@...Date: Fri, 8 Oct 2010 13:06:46 -0700Subject: (unknown)

hi. My names christine and I have suffered with neurosarcoidosis for 7 years now. every time i think ive beaten it ,it comes back with a vengance.I live in ireland and this is very rare only 3 or 4 people have it. The only treatment ive every had is steriods the dose going up and down from 60mg till 7mg daily. Was wondering does anyone else find it always gets worse this time of year.

[Guest guest]

I will weigh in on the heredity part, My mom had 2 2nd cousins in Olso, Norway with Sarcoid, I had an Aunt with it, she died just this year, she was 83, but had been really sick for a very long time.They actually didn't know what she had until I was dx, she was off and on Prednisone for years, and they didn't know what they were treating, she had it bad in  her lungs. Mine is more Neuro, but started in my lungs, and I was only the 2nd pt. and we have learned together. 

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Hi Rose . Until i found this group on the net I wasent aware of any other treatments other than prednisolone. Im also on Alendronic Acid and Lansoprazole plus 2 inhalers. I go from one extreme to the other for months I feel not to bad then bang ,legs that ache and feel as if they wont hold me,arms and hands that made me scream if touched, head that I can only discribe as feeling like a dizzy blonde plus eyesight in left eye not good. Although I  have not needed a wheel chair for 6 years I ve been close. My weight also is like a yoyo due to the doseage of prednisolone going up and down.

Theres only one neurologist here that deals with neurosarcoidosis and I was his first patient.

Do you know if theres any history of this being hereditory as my mother had sarcoid at 47 the same age as I was when it started?

 

Thanks again

 

To: neurosarcoidosis

Sent: Mon, October 11, 2010 4:45:36 AMSubject: attn: U.K. members

 

Hi, .  (I have a granddaughter named ; I think it's a lovely name!)  I don't recall having anyone else from Ireland in the group, although we do have a few folks from the U.K.  I think they are all in England.  Is it difficult for you to get to London?  I know there are some knowledgeable doctors in that area.  Another possibility, if your local doctor is willing, is to collaborate by phone with a sarc specialist.  What symptoms do you have from your neurosarc?  Are you being seen by a neurologist; any other specialists?  With NS, you definitely need combination therapy; at least two drugs.  Unfortunately, it's often tricky figuring out the best combo for a particular patient.  The first thing most docs would do is add something like Methotrexate (Mtx) or Imuran.  That allows you to decrease the dosage of Prednisone while keeping the Sarc Monster at bay.  I'm very

sorry that you have been attacked by this nasty disease, but there is hope.  This group may be the jumping-off place for you to get started on a more effective treatment plan. 

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

To: Neurosarcoidosis From: christine.robinson52@...Date: Fri, 8 Oct 2010 13:06:46 -0700

Subject: (unknown)

hi. My names christine and I  have suffered with neurosarcoidosis for 7 years now. every time i think ive beaten it ,it comes back with a vengance.I live in ireland and this is very rare only 3 or 4 people have it. The only treatment ive every had is steriods the dose going up and down from 60mg till 7mg daily. Was wondering does anyone else find it always gets worse this time of year.

[Guest guest]

I always notice at this time of year my sarcoidosis acts up. I always get erythema nodosum in my knees or shins. I have no idea why it flares up but I am also still on prednisone and trying to reduce.

Does anyone have any idea why it flares at this time of year?

Kat

[Guest guest]

This time of year for me is winter, and my body hates the cold, when I get cold, I hurt really bad, so that's why I hate this time of year, right now it's fall, and not too bad, temps in the 60'sto 80's, I can't tolerate the heat either, and my AC is out in my car, so ready for a cool down.

when it's cold out, I stay home and keep warm in my chair, and heated throw blanket, sometimes I get too hot as I end up with my  3 dogs lying around me too:)  Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I always notice at this time of year my sarcoidosis acts up.   I always get erythema nodosum in my knees or shins.  I have no idea why it flares up but I am also still on prednisone and trying to reduce.

 

Does anyone have any idea why it flares at this time of year?

 

Kat

[Guest guest]

I have a Homeopathic at my office called Cold and Flu. It is not offered in any store as OTC. It is a miracle supplement that if used exactly the way I inform you (not what's on the bottle) It will get rid of colds in 85% of the people in a matter of hours. If it is too late and you did catch it in time then I a special zinc and if used the way I prescribed will cut the time of the cold to 2-3 days. Even with Sarc I have only had 2 colds in the last 14 years (both time we were out, I now keep at least 8 bottles around the house and in my cars because it has to be taken AS SOON AS ANY SYMPTOMS APPEAR for it to work that quickly)

I'm not sure of the price but I think I sell it in my office for $16 and $5-6 for the Zinc. If anyone is interested. I will figure out my cost and shipping and send it to you. I sell hundreds of bottles of this during this time of year because it works so incredible. If interested or want more info just drop me a note here or to e-mail MJCV29A@...

G-d Bless

Mitch.

Re: Re: attn: U.K. members

This time of year for me is winter, and my body hates the cold, when I get cold, I hurt really bad, so that's why I hate this time of year, right now it's fall, and not too bad, temps in the 60'sto 80's, I can't tolerate the heat either, and my AC is out in my car, so ready for a cool down.

when it's cold out, I stay home and keep warm in my chair, and heated throw blanket, sometimes I get too hot as I end up with my 3 dogs lying around me too:)

Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

I always notice at this time of year my sarcoidosis acts up. I always get erythema nodosum in my knees or shins. I have no idea why it flares up but I am also still on prednisone and trying to reduce.

Does anyone have any idea why it flares at this time of year?

Kat

[Guest guest]

Hi, . It sounds like you feel isolated; I hope that this group helps somewhat. It's not the same as in-person contact, but better than nothing. I guess I need to remember to count my blessings. We have an active sarcoidosis support group here in central Indiana, in the U.S. & last weekend I attended the annual retreat/conference. There are only a few in the area with NS, but just having so many who understand sarcoidosis is wonderful. We had folks from Ohio, Illinois & Alabama there; maybe some other states also.

I found this support group under Yahoo groups. I don't know how active they are; it listed only 7 members, but perhaps some of the members of this list could join, if they are not already included. Just remember that we are here for you. Even when folks are not posting, many are reading the messages & thinking of the writers.

http://uk.groups.yahoo.com/group/NeurosarcoidUK/

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: christine.robinson52@...Date: Mon, 11 Oct 2010 13:21:25 -0700Subject: Re: attn: U.K. members

Hi Rose . Until i found this group on the net I wasent aware of any other treatments other than prednisolone. Im also on Alendronic Acid and Lansoprazole plus 2 inhalers. I go from one extreme to the other for months I feel not to bad then bang ,legs that ache and feel as if they wont hold me,arms and hands that made me scream if touched, head that I can only discribe as feeling like a dizzy blonde plus eyesight in left eye not good. Although I have not needed a wheel chair for 6 years I ve been close. My weight also is like a yoyo due to the doseage of prednisolone going up and down.

Theres only one neurologist here that deals with neurosarcoidosis and I was his first patient.

Do you know if theres any history of this being hereditory as my mother had sarcoid at 47 the same age as I was when it started?

Thanks again

To: neurosarcoidosis Sent: Mon, October 11, 2010 4:45:36 AMSubject: attn: U.K. members

Hi, . (I have a granddaughter named ; I think it's a lovely name!) I don't recall having anyone else from Ireland in the group, although we do have a few folks from the U.K. I think they are all in England. Is it difficult for you to get to London? I know there are some knowledgeable doctors in that area. Another possibility, if your local doctor is willing, is to collaborate by phone with a sarc specialist. What symptoms do you have from your neurosarc? Are you being seen by a neurologist; any other specialists? With NS, you definitely need combination therapy; at least two drugs. Unfortunately, it's often tricky figuring out the best combo for a particular patient. The first thing most docs would do is add something like Methotrexate (Mtx) or Imuran. That allows you to decrease the dosage of Prednisone while keeping the Sarc Monster at bay. I'm very sorry that you have been attacked by this nasty disease, but there is hope. This group may be the jumping-off place for you to get started on a more effective treatment plan.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: christine.robinson52@...Date: Fri, 8 Oct 2010 13:06:46 -0700Subject: (unknown)

hi. My names christine and I have suffered with neurosarcoidosis for 7 years now. every time i think ive beaten it ,it comes back with a vengance.I live in ireland and this is very rare only 3 or 4 people have it. The only treatment ive every had is steriods the dose going up and down from 60mg till 7mg daily. Was wondering does anyone else find it always gets worse this time of year.

[Guest guest]

Statistically, people of Scandinavian descent, like Marla, have higher rates of sarc. I don't know where Ireland fits in statistically. In years past the belief was that other than the Scandinavian connection, if multiple family members had sarc it was probably an environmental factor. That seems to be changing as there is increasing evidence of a genetic predisposition that is then triggered by something in the environment.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: mebramer@...Date: Tue, 12 Oct 2010 21:08:42 -0600Subject: Re: attn: U.K. members

I will weigh in on the heredity part, My mom had 2 2nd cousins in Olso, Norway with Sarcoid, I had an Aunt with it, she died just this year, she was 83, but had been really sick for a very long time.They actually didn't know what she had until I was dx, she was off and on Prednisone for years, and they didn't know what they were treating, she had it bad in her lungs. Mine is more Neuro, but started in my lungs, and I was only the 2nd pt. and we have learned together. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Hi Rose . Until i found this group on the net I wasent aware of any other treatments other than prednisolone. Im also on Alendronic Acid and Lansoprazole plus 2 inhalers. I go from one extreme to the other for months I feel not to bad then bang ,legs that ache and feel as if they wont hold me,arms and hands that made me scream if touched, head that I can only discribe as feeling like a dizzy blonde plus eyesight in left eye not good. Although I have not needed a wheel chair for 6 years I ve been close. My weight also is like a yoyo due to the doseage of prednisolone going up and down.

Theres only one neurologist here that deals with neurosarcoidosis and I was his first patient.

Do you know if theres any history of this being hereditory as my mother had sarcoid at 47 the same age as I was when it started?

Thanks again

To: neurosarcoidosis Sent: Mon, October 11, 2010 4:45:36 AMSubject: attn: U.K. members

Hi, . (I have a granddaughter named ; I think it's a lovely name!) I don't recall having anyone else from Ireland in the group, although we do have a few folks from the U.K. I think they are all in England. Is it difficult for you to get to London? I know there are some knowledgeable doctors in that area. Another possibility, if your local doctor is willing, is to collaborate by phone with a sarc specialist. What symptoms do you have from your neurosarc? Are you being seen by a neurologist; any other specialists? With NS, you definitely need combination therapy; at least two drugs. Unfortunately, it's often tricky figuring out the best combo for a particular patient. The first thing most docs would do is add something like Methotrexate (Mtx) or Imuran. That allows you to decrease the dosage of Prednisone while keeping the Sarc Monster at bay. I'm very sorry that you have been attacked by this nasty disease, but there is hope. This group may be the jumping-off place for you to get started on a more effective treatment plan.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: christine.robinson52@...Date: Fri, 8 Oct 2010 13:06:46 -0700Subject: (unknown)

hi. My names christine and I have suffered with neurosarcoidosis for 7 years now. every time i think ive beaten it ,it comes back with a vengance.I live in ireland and this is very rare only 3 or 4 people have it. The only treatment ive every had is steriods the dose going up and down from 60mg till 7mg daily. Was wondering does anyone else find it always gets worse this time of year.

[Guest guest]

Thank you Rose it means a lot, Ill give it a go

To: neurosarcoidosis Sent: Fri, October 15, 2010 6:32:28 AMSubject: RE: attn: U.K. members

Hi, . It sounds like you feel isolated; I hope that this group helps somewhat. It's not the same as in-person contact, but better than nothing. I guess I need to remember to count my blessings. We have an active sarcoidosis support group here in central Indiana, in the U.S. & last weekend I attended the annual retreat/conference. There are only a few in the area with NS, but just having so many who understand sarcoidosis is wonderful. We had folks from Ohio, Illinois & Alabama there; maybe some other states also. I found this support group under Yahoo groups. I don't know how active they are; it listed only 7 members, but perhaps some of the members of this list could join, if they are not already included. Just remember that we are here for you. Even when folks are not posting, many are reading the messages & thinking of the

writers. http://uk.groups.yahoo.com/group/NeurosarcoidUK/

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: christine.robinson52@...Date: Mon, 11 Oct 2010 13:21:25 -0700Subject: Re: attn: U.K. members

Hi Rose . Until i found this group on the net I wasent aware of any other treatments other than prednisolone. Im also on Alendronic Acid and Lansoprazole plus 2 inhalers. I go from one extreme to the other for months I feel not to bad then bang ,legs that ache and feel as if they wont hold me,arms and hands that made me scream if touched, head that I can only discribe as feeling like a dizzy blonde plus eyesight in left eye not good. Although I have not needed a wheel chair for 6 years I ve been close. My weight also is like a yoyo due to the doseage of prednisolone going up and down.

Theres only one neurologist here that deals with neurosarcoidosis and I was his first patient.

Do you know if theres any history of this being hereditory as my mother had sarcoid at 47 the same age as I was when it started?

Thanks again

To: neurosarcoidosis Sent: Mon, October 11, 2010 4:45:36 AMSubject: attn: U.K. members Hi, . (I have a granddaughter named ; I think it's a lovely name!) I don't recall having anyone else from Ireland in the group, although we do have a few folks from the U.K. I think they are all in England. Is it difficult for you to get to London? I know there are some knowledgeable doctors in that area. Another possibility, if your local doctor is willing, is to collaborate by phone with a sarc specialist. What symptoms do you have from your neurosarc? Are you being seen by a neurologist; any other specialists? With NS, you definitely need combination therapy; at least two drugs. Unfortunately, it's often tricky figuring out the best combo for a particular patient. The first thing most docs would do is add something like Methotrexate (Mtx) or Imuran. That allows you to decrease the dosage of Prednisone while keeping the Sarc Monster at

bay. I'm very sorry that you have been attacked by this nasty disease, but there is hope. This group may be the jumping-off place for you to get started on a more effective treatment plan.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: christine.robinson52@...Date: Fri, 8 Oct 2010 13:06:46 -0700Subject: (unknown)

hi. My names christine and I have suffered with neurosarcoidosis for 7 years now. every time i think ive beaten it ,it comes back with a vengance.I live in ireland and this is very rare only 3 or 4 people have it. The only treatment ive every had is steriods the dose going up and down from 60mg till 7mg daily. Was wondering does anyone else find it always gets worse this time of year.