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Re: Neurosarc specialist?

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Hi ,

Thanks for writing. I am glad you found us but sorry that you have

Sarcoidosis.

I am going to forward your email to our list and ask for help in finding a

surgeon

near you. I hope that is ok with you. Please allow a couple of days or so

for someone

to answer as we are all very sick..........but we have a good group (nearly

500 members)

and many are willing to help and share info.

We also have very good info in our files section.........please feel

free to browse

through those and also past messages. You can use Search on the archived

messages

and find lots of info there.

As for the Prednisone, yes, usually the Doctors try the Pred

first..........sometimes it

works well and a person will go into remission..........other times it does

not seem to help

and when you have to be on it again, it just seems to cause the Sarcoidosis

to break out

in another area.........but each person is different. I was diagnosed in

1996, I believe. I

had it in my lungs first and by the time I was diagnosed (after 3 years of

doctors), it had

already damaged my lungs. Now, it is spread to other places in my body.

I am taking

Imuran........been on it for 4 years now, I think, It has helped a lot but

I still have flareups

as most people do.

As for the Marshall Protocol, we do NOT recommend it. We have found

it not to be

factual and it is very misleading. There is lots of info around on this.

Please be careful

in this area.

We have people from all over the world here; people from all walks

of life; several

people with medical backgrounds; etc. Please feel free to ask any and all

questions

but remember..........give them time to answer.........we are all sick.

Again, welcome to our list. Tracie and myself are co-owners of this

list and we have

Debbie, Rose, Theresa, and Kim as moderators. Kim has been very ill and is

not active

on the list right now -- as is Rose. Theresa and Debbie are around as much

as they can

be and Tracie is presently on a little vacation but will be back sometime

this weekend.

I am here as much as possible. Usually in the early morning and the

evening, but I pop in

during the day when I can.

Hope this helps a little and we are looking forward to getting to know

you better.

Hugs,

Darlene

NS Co-Owner/Moderator

Neurosarc specialist?

Hi Darlene, my name is . I live in Norman, OK. I've just been diagnosed

with

Sarcoidosis. I've got in in my spinal canal, from T2 to T9. I've also got in

in my chest lymph

nodes.

I'm hoping to find a specialist soon. My neurologist has prescribed what

seems to be

standard: 60mg Pred + Imuran(can't remember the dosage). I'll start that

next week after I

heal from having my wisdom teeth out. However, I've just started reading

about the Marshall

Protocol, and it seems interesting.

If there is any advice you have regarding specialists/treatment, I'd love to

hear it. Thank you

so much and God Bless!

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Hi ,

Thanks for writing. I am glad you found us but sorry that you have

Sarcoidosis.

I am going to forward your email to our list and ask for help in finding a

surgeon

near you. I hope that is ok with you. Please allow a couple of days or so

for someone

to answer as we are all very sick..........but we have a good group (nearly

500 members)

and many are willing to help and share info.

We also have very good info in our files section.........please feel

free to browse

through those and also past messages. You can use Search on the archived

messages

and find lots of info there.

As for the Prednisone, yes, usually the Doctors try the Pred

first..........sometimes it

works well and a person will go into remission..........other times it does

not seem to help

and when you have to be on it again, it just seems to cause the Sarcoidosis

to break out

in another area.........but each person is different. I was diagnosed in

1996, I believe. I

had it in my lungs first and by the time I was diagnosed (after 3 years of

doctors), it had

already damaged my lungs. Now, it is spread to other places in my body.

I am taking

Imuran........been on it for 4 years now, I think, It has helped a lot but

I still have flareups

as most people do.

As for the Marshall Protocol, we do NOT recommend it. We have found

it not to be

factual and it is very misleading. There is lots of info around on this.

Please be careful

in this area.

We have people from all over the world here; people from all walks

of life; several

people with medical backgrounds; etc. Please feel free to ask any and all

questions

but remember..........give them time to answer.........we are all sick.

Again, welcome to our list. Tracie and myself are co-owners of this

list and we have

Debbie, Rose, Theresa, and Kim as moderators. Kim has been very ill and is

not active

on the list right now -- as is Rose. Theresa and Debbie are around as much

as they can

be and Tracie is presently on a little vacation but will be back sometime

this weekend.

I am here as much as possible. Usually in the early morning and the

evening, but I pop in

during the day when I can.

Hope this helps a little and we are looking forward to getting to know

you better.

Hugs,

Darlene

NS Co-Owner/Moderator

Neurosarc specialist?

Hi Darlene, my name is . I live in Norman, OK. I've just been diagnosed

with

Sarcoidosis. I've got in in my spinal canal, from T2 to T9. I've also got in

in my chest lymph

nodes.

I'm hoping to find a specialist soon. My neurologist has prescribed what

seems to be

standard: 60mg Pred + Imuran(can't remember the dosage). I'll start that

next week after I

heal from having my wisdom teeth out. However, I've just started reading

about the Marshall

Protocol, and it seems interesting.

If there is any advice you have regarding specialists/treatment, I'd love to

hear it. Thank you

so much and God Bless!

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