neurosarcoidosis

[Guest guest]

What are they giving you? I've never heard of chemo for this, but I

don't know that much. I just started Remicade and it's helping a lot,

although I may be starting some side effects which aren't too great.

My NS is VERY responsive to prednisone, so if you are not, then

Remicade may not help. My understanding is that sarcoidosis is usually

very responsive to steroids so the fact that your NS doesn't respond

at all is a little confusing to me. Tracie, our co-moderator is very

knowledgeble so perhaps she can help you. -

[Guest guest]

I am new to this group. Just found you today. Although I would not

wish this thing on anyone it was nice to find someone who actually has

neurosarcoidosis. I have chated with alot of people who have sarcoids

but not many who have it in their brain like i do. I have it in two

places in my brain right now and am hoping that it doesn't decide to

move to any place else. I have had it for about 8 or 9 years but it

took them 7 years to diagnose. I feel like i need to learn more about

what i have so i can do more to keep myself as well and strong as

possible. I have pain in my head and my right side goes numb. I lose

my balance and my memory isn't so good. Some days are better some are

not so good. I am currently on methotrexate and they are weening me

off of predisone. Done to 10 mgs a day.

Any way thanks for this group and bless you all

[Guest guest]

I have over twenty 5 mm areas in my brain. I was diagnosed with

pulmonary sarcoidosis about two years ago and not responding to

Prednisone. I have tried Methotrexate, Imuran, and Plaquenil and now

it is in my brain. I started having facial numbness, vision problems

and awful headaches. They did a brain MRI and found these spots. They

started me on emergent chemotherapy (Cytoxan, Mesna). They said they

will do two rounds of chemo and then do another brain MRI and see if

they are shrinking. I feel like they are just guessing as to how to

treat this. Thanks for your input.

" wendy_cidp " wrote:

>

> What are they giving you? I've never heard of chemo for this, but I

> don't know that much. I just started Remicade and it's helping a lot,

> although I may be starting some side effects which aren't too great.

> My NS is VERY responsive to prednisone, so if you are not, then

> Remicade may not help. My understanding is that sarcoidosis is usually

> very responsive to steroids so the fact that your NS doesn't respond

> at all is a little confusing to me. Tracie, our co-moderator is very

> knowledgeble so perhaps she can help you. -

>

[Guest guest]

They are giving me Cytoxan and Mesna. They will try two round of chemo

and then see if the areas in my brain have shrunk down any. It really

helps to hear from others who know what I am going through.

>

> What kind of chemo are they using?

>

> It's a hard one, but a combination of several immunosupressants is

what most

> of us need.

>

> I did another post just a few minutes ago, where I explained that MTX

> (methotrexate), Plaquenil and Remicade are what has worked for me.

>

> Take care, and know you are among friends fighting the same battle.

>

> Sincerely,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

, I was diagnosed about two years ago with pulmonary sarcoidosis. It

then went to my spleen. Now I have started the last three months or so with

vision problems, losing my vision, facial numbness, and terrible headaches.

They did an MRI of the brain and found over twenty 5 mm areas of sarcoidosis

in my brain. They started emergent chemotherapy and said they will do at

least six cycles with a brain MRI after the second cycle to see if it is

working. They just want to get these areas shrunk down. I think it has been

in my brain for a long time also to have that many places. I feel like they

are trying chemotherapy becasue they don't know what else to do. Hopefully

they do. I was on Prednisone therapy and did not respond, then

Methotrexate, Imuran, Plaquenil, and now this. I don't know a lot about it

either right now, but will be happy to keep you informed. Hopefully you

respond great to the Methotrexate. I think I am a really advanced case.

Would love to hear from you again, it really helps to talk about it with

someone going through the same thing. Lori

>

>I am new to this group. Just found you today. Although I would not

>wish this thing on anyone it was nice to find someone who actually has

>neurosarcoidosis. I have chated with alot of people who have sarcoids

>but not many who have it in their brain like i do. I have it in two

>places in my brain right now and am hoping that it doesn't decide to

>move to any place else. I have had it for about 8 or 9 years but it

>took them 7 years to diagnose. I feel like i need to learn more about

>what i have so i can do more to keep myself as well and strong as

>possible. I have pain in my head and my right side goes numb. I lose

>my balance and my memory isn't so good. Some days are better some are

>not so good. I am currently on methotrexate and they are weening me

>off of predisone. Done to 10 mgs a day.

>Any way thanks for this group and bless you all

>

>

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[Guest guest]

Hi Lori, I was wondering, you had said your sarcoid went to your spleen. Did you have any symptoms with that? Or did that just happen to show up via another test for something else?Debbie T.Co-ModeratorLori Pavey wrote: , I was diagnosed about two years ago with pulmonary sarcoidosis. It then went to my spleen. Now I have started the last three months or so with vision problems, losing my vision, facial numbness, and terrible headaches. They did an MRI of the brain and found over twenty 5 mm areas of sarcoidosis in my brain. They started emergent chemotherapy and said they will do at least six cycles with a brain MRI after the second cycle to see if it is working. They just want to get these areas shrunk down. I think it has been

in my brain for a long time also to have that many places. I feel like they are trying chemotherapy becasue they don't know what else to do. Hopefully they do. I was on Prednisone therapy and did not respond, then Methotrexate, Imuran, Plaquenil, and now this. I don't know a lot about it either right now, but will be happy to keep you informed. Hopefully you respond great to the Methotrexate. I think I am a really advanced case. Would love to hear from you again, it really helps to talk about it with someone going through the same thing. Lori>>I am new to this group. Just found you today. Although I would not>wish this thing on anyone it was nice to find someone who actually has>neurosarcoidosis. I have chated with alot of people who have sarcoids>but not many who have it in their brain like i do. I have it in two>places in my brain right now and am hoping that it doesn't decide

to>move to any place else. I have had it for about 8 or 9 years but it>took them 7 years to diagnose. I feel like i need to learn more about>what i have so i can do more to keep myself as well and strong as>possible. I have pain in my head and my right side goes numb. I lose>my balance and my memory isn't so good. Some days are better some are>not so good. I am currently on methotrexate and they are weening me>off of predisone. Done to 10 mgs a day.>Any way thanks for this group and bless you all>>_________________________________________________________________Laugh, share and connect with Windows Live Messenger http://clk.atdmt.com/MSN/go/msnnkwme0020000001msn/direct/01/?href=http://imagine-msn.com/messenger/launch80/default.aspx?locale=en-us & source=hmtagline~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS:

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[Guest guest]

Hi Cherisse,

I as well, have sarcoid on the optic nerve; my doctor, Carleen Lowder

of the Cole Vision Eye Center at the Cleveland Clinic calls it

UVEITIS.

In order to treat the inflammation, I had to take steroid eye drops

every fifteen minutes at first, incrimentally that was reduced and

now I do not take the drops at all, however, to calm all of my

symptoms down, I take methotrexate, prednisone and it is okay, but

the weight gain is hell. I am fat anyway.

Here is what I suggest: stay on course with your doctor and ask

questions, keep a journal and take notes of all your experiences. Use

this group to explore and read about others experiences to help you

deal with what you are going through. This group is awesome.

Also I have found that stress is a big part of my flareups and also

keeping my potassium up to par is good too.

Best of luck to you and stay positive.

Madonna

[Guest guest]

Thanks for your advice, i live in england, and you don't really hear of NS over hear, sometimes i feel my neurologist dosn't know what to do with  me. Re: neurosarcoidosis

Hi Cherisse,

I as well, have sarcoid on the optic nerve; my doctor, Carleen Lowder

of the Cole Vision Eye Center at the Cleveland Clinic calls it

UVEITIS.

In order to treat the inflammation, I had to take steroid eye drops

every fifteen minutes at first, incrimentally that was reduced and

now I do not take the drops at all, however, to calm all of my

symptoms down, I take methotrexate, prednisone and it is okay, but

the weight gain is hell. I am fat anyway.

Here is what I suggest: stay on course with your doctor and ask

questions, keep a journal and take notes of all your experiences. Use

this group to explore and read about others experiences to help you

deal with what you are going through. This group is awesome.

Also I have found that stress is a big part of my flareups and also

keeping my potassium up to par is good too.

Best of luck to you and stay positive.

Madonna

Sent from Yahoo! Mail.

A Smarter Email.

[Guest guest]

Cherisse,

I had optic neuritis in Jan 2007 where I could not see anything close. Very scary. I had 3 IVs of solumedrol and have had the IVs of solumedrol for the last 16 months. I have gradually gone from 4 weeks to 6 weeks. The dosage was 1000 and 6 months ago reduced to 500. I was also started on 60 mg of oral prednisone and reduced to 10 but started having problems with my arms and legs and we went back up to 15 mg. I am on a regimen of vitamins and probiotics plus fish oil per my neurologist. I had sarcoidosis of my left lung and lymph nodes in 1980 and they felt I would never have another attack in my life with those symptoms. I occasionally over the years and stress go through erythema nodusum and minor attacks.

As everyone knows this is so scary as they were having a hard time figuring out was it MS or NS when symptoms are the same and tests are coming back normal except for my MRI which showed I had 3 lesions. Hard for people that are close to you to understand when you look normal but you can talk right, stutter, can't remember things, say one thing and mean another, you can't write, swallowing problems, facial numbness and whole left side of your body, bladder problems, you walk to the right, lose balance, can't lift anymore, fatigue and the effects of the medicine. I have found out who my true friends are through this situation. The sad part is my daughter who has totally shut me out and I can't see my grandsons. She only will email me and does not understand why I am not like I use to be and won't bring the kids to see me. That has hurt the most but you hope someday that they stop and realize.

You have found a good group. I was so thankful to find this group on line and realize I was not alone. I live alone with my cat and have a house and a lot of yardwork. I was always going 24/7 and have a high stress job and have learned to make many adjustments in my life. I also have to constantly recheck my work to ensure that I am accurate as I do have damage to my left eye. Drs cannot believe how much damage and how well I can see. I can't tell what damage it has done as I see but there are parts I must not see. Weird but true. So with my life transformation coach I have had to learn to do many different things in order to heal the last 16 months which has been so beneficial.

My first attack in 1980 started shortly after we started renovating our home. We busted out sheetrock (old plaster board) with hammers and did not know to wear masks then and the house was filled with the dust. This last time I have been remodeling the inside of my home with new carpet, paint, sanding floors and I remember the installation of a bamboo floor and the man cut the wood in the house which I was fearful of with my wood allergy. I stepped into the living room to see what he was doing and when I walked into the room it was like I was physically slammed like I walked into a wall. It was an oddest feeling. I was having some problems with memory loss right before this happened but the very next day after this floor incident I developed optic neuritis and then all the symptoms followed.

I am happy that you found this group. With my living alone and so frightened, they gave me so much support when I needed it most and I am so grateful.

Hugs,

KatWondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food.

[Guest guest]

Back in the 80's, 90's and now even today, our docs think that if you have pulm sarc that it's going to burn itself out, and no big deal. What the studies are showing is that when our pulm sarc gets to where we were put on prednisone, and then weaned off the prednisone, within a couple of years, we (those treated with pred) end up with a systemic case of sarcoidosis, and they haven't a clue what to do with us.

Those that didn't progess to needing pred, or decided to "live with it" have less systemic involvement later. However, if you start out with sarc in more than just the lungs, like if you had iritis with pulm sarc, or sarcoid-induced arthritis (it was probably misdiagnosed as fibromyalgia, or one of many types of arthritis) that you will have a more ongoing chronic progression.

They don't know yet why-- and I've yet to come across the next chapter...

AAARRGGH,

Tracie

NS Co-owner/moderator

Re: Re: neurosarcoidosis

Cherisse,

I had optic neuritis in Jan 2007 where I could not see anything close. Very scary. I had 3 IVs of solumedrol and have had the IVs of solumedrol for the last 16 months. I have gradually gone from 4 weeks to 6 weeks. The dosage was 1000 and 6 months ago reduced to 500. I was also started on 60 mg of oral prednisone and reduced to 10 but started having problems with my arms and legs and we went back up to 15 mg. I am on a regimen of vitamins and probiotics plus fish oil per my neurologist. I had sarcoidosis of my left lung and lymph nodes in 1980 and they felt I would never have another attack in my life with those symptoms. I occasionally over the years and stress go through erythema nodusum and minor attacks.

As everyone knows this is so scary as they were having a hard time figuring out was it MS or NS when symptoms are the same and tests are coming back normal except for my MRI which showed I had 3 lesions. Hard for people that are close to you to understand when you look normal but you can talk right, stutter, can't remember things, say one thing and mean another, you can't write, swallowing problems, facial numbness and whole left side of your body, bladder problems, you walk to the right, lose balance, can't lift anymore, fatigue and the effects of the medicine. I have found out who my true friends are through this situation. The sad part is my daughter who has totally shut me out and I can't see my grandsons. She only will email me and does not understand why I am not like I use to be and won't bring the kids to see me. That has hurt the most but you hope someday that they stop and realize.

You have found a good group. I was so thankful to find this group on line and realize I was not alone. I live alone with my cat and have a house and a lot of yardwork. I was always going 24/7 and have a high stress job and have learned to make many adjustments in my life. I also have to constantly recheck my work to ensure that I am accurate as I do have damage to my left eye. Drs cannot believe how much damage and how well I can see. I can't tell what damage it has done as I see but there are parts I must not see. Weird but true. So with my life transformation coach I have had to learn to do many different things in order to heal the last 16 months which has been so beneficial.

My first attack in 1980 started shortly after we started renovating our home. We busted out sheetrock (old plaster board) with hammers and did not know to wear masks then and the house was filled with the dust. This last time I have been remodeling the inside of my home with new carpet, paint, sanding floors and I remember the installation of a bamboo floor and the man cut the wood in the house which I was fearful of with my wood allergy. I stepped into the living room to see what he was doing and when I walked into the room it was like I was physically slammed like I walked into a wall. It was an oddest feeling. I was having some problems with memory loss right before this happened but the very next day after this floor incident I developed optic neuritis and then all the symptoms followed.

I am happy that you found this group. With my living alone and so frightened, they gave me so much support when I needed it most and I am so grateful.

Hugs,

Kat

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