Re: My Husband

November 11, 2005

Thank you so much for writing me back. I think joining this group is going to help me since everyone else I talk to about this disease looks at me like I'm crazy. It looks like were all in the same boat together just trying to get by day to day. It's so frustrating that the doctors and insurance companies cant do anything for us. My husband does the same thing when people ask him how he's doing and he says "okay". Because who really wants to go into the long drawn out details. It's too depressing. Plus everyday is different. I cant believe you have had to live with this for 11 years. We are only on our first year and it seems like an eternity. Stay strong and i will also keep you in my prayers. Thanks again for your kind words.

Lorimarla wrote:

I am so sorry to hear about your husband, this is not a fun disease, and made even worse when the insurance company thinks they know more then the doctors. I was just refused Remicade treatment from my insurance co too, stated the same reason. Will I will just keep on trying, until they say "alright already". I am sorry for all your husband is going through, it is not easy, however, I was able to get off steroids with the treatment of Plaquanil and Methotrexate, I was on steroids for 3 years, and man that was a nightmare, and I hope to never go on them again, so I know the mixed feeling he has about the drug, I call it my love/hate relationship. I have had Sarcoid for 11 years now, first lungs, then systemic, then neuro. so it was one thing to the next. I am hanging in there with the Plaquanil and the Metotrexate, and of

course many of other drugs for pain, especially nerve pain, but now joint pain too. I say keep at the insurance company on the Remicade, it sounds like our best bet!! Yes it is very hard for others to understand what we are going through, because like you said we don't really look sick, we just feel like hell. I have a friend with type 1 diabetes, and stress causes it to go crazy, and she has been under a lot of stress, and when she ask me how I feel and i say fine, and i ask her and she says fine, then we laugh and look at each other, and say, "lier" :-) . cuz we know how the other feels. but that always seems to be the answer, I hate to say, well to be honest I feel like hell! I will keep your husband in my prayers, do know that we know what he is going through and it is tough seeing your love one go through this. Please keep us informed, and feel free to ask, or just rant

anytime, that's what we are here for, this group of people is the best you will find anymore, and very knowledgeable about this disease. God Bless, Marla

My husband was diagnosed with neurosarcoidosis last July. He had been suffering numbness, facial palsy, seizures, migranes, hallucination and all the bad stuff that comes with this awful disease. He was very inflamed when we finally got him to the Mayo Clinic were they diagnosed him. They told us he would probably have to be on meds for 12 to 16 months before he would be somewhat back to normal. Well he has been on meds for 14months now and has got somewhat better but defineatly not living a normal life. He takes Kepra for the seizures and Prednisone for the brain swelling. He is also on methotrexate which makes him very sick to his stomach every weekend. Having been on prednisone for so long he has suffered the side affects of weight gain, depression, high blood pressure, high colesteral, extreme mood swings and just started to get toxic with breakouts all over his skin. With all the side effects he decided to stop taking the prednisone and within a month all of his symtoms are coming back. We have been trying to get approved for remicaid which I hear works miracles when combined with methotrexate but was denied by the insurance company because it is still considered experimental. He cant go to work because he is always exhausted or has a head ache. Unfortunatly he is going back on the prednisone because nothing else seems to work. What worries us is is he going to die from the side affects of the prednisone first rather than the disease. No one understands what we go through because they see him and he doesn't look sick. Just like people suffering MS. He is tired of being sick and taking all of this medicine which doesnt make him feel any better only worse. Will this ever end. We have seen neurologist, rhuemetologist, specialist and no one has an answer because they still dont know what causes it. They only know to keep shoving steriods down our throat. I am tired and frustrated and cant keep living like this. Any help of advice would be greatly appreciated. I am trying to stay positive and strong but it gets harder every day I have to watch my husband hold his head and cry in pain and don't know what to do for him. HELP!!

November 11, 2005

I'm tempted to print out a stack of little cards with

all my symptoms listed & just hand them out to those with inquiring

minds.

That's a great idea Rose, then you wouldn't have

to say anything :-) .

Marla

I missed the initial letter about this, but Marla,

your reply gave me some thoughts. If the MTX is making him so sick,

ask if he can have it in injection form. I forget who, but somebody of

the list injects herself every week. This also bypasses the liver,

decreasing the risk of liver toxicity.

Also, whoever wrote the first letter, have you

looked at our Links section? There are lots of good resources there.

One you may especially read and print out for his doctor is the Pro

& Con debate on Prednisone, which also briefly discusses

alternative treatments. Have any of his doctors suggested Cytoxan?

When I saw Baughman in May, he suggested I take either Cytoxan or

Remicade. Most insurance covers Cytoxan. I certainly understand your

frustration at the situation. It's scary to experience these

complications & worry whether they will result in permanent damage

if not treated effectively, but also worry about damage from the drugs

themselves. Some of it just requires that you just trust your

instincts.

Marla, regarding people who ask how you are

feeling, my stock answer has become, "Good enough." I'm not pretending

I'm fine, and they don't have to hear a litany of complaints. I'm

tempted to print out a stack of little cards with all my symptoms

listed & just hand them out to those with inquiring minds.

Ramblin' Rose

Moderator

From: marla

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: Re: My Husband

Date: Fri, 11 Nov 2005 00:33:29 -0800

I am so sorry to hear about your

husband, this is not a fun disease, and made even worse when the

insurance company thinks they know more then the doctors. I was just

refused Remicade treatment from my insurance co too, stated the same

reason. Will I will just keep on trying, until they say "alright

already". I am sorry for all your husband is going through, it is not

easy, however, I was able to get off steroids with the treatment of

Plaquanil and Methotrexate, I was on steroids for 3 years, and man that

was a nightmare, and I hope to never go on them again, so I know the

mixed feeling he has about the drug, I call it my love/hate

relationship. I have had Sarcoid for 11 years now, first lungs, then

systemic, then neuro. so it was one thing to the next. I am hanging

in there with the Plaquanil and the Metotrexate, and of course many of

other drugs for pain, especially nerve pain, but now joint pain too. I

say keep at the insurance company on the Remicade, it sounds like our

best bet!!

Yes it is very hard for others to understand what we are going through,

because like you said we don't really look sick, we just feel like

hell. I have a friend with type 1 diabetes, and stress causes it to go

crazy, and she has been under a lot of stress, and when she ask me how

I feel and i say fine, and i ask her and she says fine, then we laugh

and look at each other, and say, "lier"

:-) . cuz we know how the other feels. but that always

seems to be the answer, I hate to say, well to be honest I feel like

hell!

I will keep your husband in my prayers, do know that we know what he is

going through and it is tough seeing your love one go through this.

Please keep us informed, and feel free to ask, or just rant anytime,

that's what we are here for, this group of people is the best you will

find anymore, and very knowledgeable about this disease.

God Bless,

Marla

My husband was diagnosed with neurosarcoidosis last July. He had

been suffering numbness, facial palsy, seizures, migranes,

hallucination and all the bad stuff that comes with this awful

disease. He was very inflamed when we finally got him to the Mayo

Clinic were they diagnosed him. They told us he would probably have

to be on meds for 12 to 16 months before he would be somewhat back

to normal. Well he has been on meds for 14months now and has got

somewhat better but defineatly not living a normal life. He takes

Kepra for the seizures and Prednisone for the brain swelling. He is

also on methotrexate which makes him very sick to his stomach every

weekend. Having been on prednisone for so long he has suffered the

side affects of weight gain, depression, high blood pressure, high

colesteral, extreme mood swings and just started to get toxic with

breakouts all over his skin. With all the side effects he decided

to stop taking the prednisone and within a month all of his symtoms

are coming back. We have been trying to get approved for remicaid

which I hear works miracles when combined with methotrexate but was

denied by the insurance company because it is still considered

experimental. He cant go to work because he is always exhausted or

has a head ache. Unfortunatly he is going back on the prednisone

because nothing else seems to work. What worries us is is he going

to die from the side affects of the prednisone first rather than the

disease. No one understands what we go through because they see him

and he doesn't look sick. Just like people suffering MS. He is

tired of being sick and taking all of this medicine which doesnt

make him feel any better only worse. Will this ever end. We have

seen neurologist, rhuemetologist, specialist and no one has an

answer because they still dont know what causes it. They only know

to keep shoving steriods down our throat. I am tired and frustrated

and cant keep living like this. Any help of advice would be greatly

appreciated. I am trying to stay positive and strong but it gets

harder every day I have to watch my husband hold his head and cry in

pain and don't know what to do for him. HELP!!

November 11, 2005

PRAYER IS THE KEY! Pray at all times my dear friend. That is what

you are to do. It is truly the main source of you strength and peace

of mind. It will not make everything suddenly disappear, but it will

give you comfort and courage to keep on going.

So try this daily, several times throughout the day. And watch how

it takes you from one moment to the next. And that is one of the

keys to surviving this awful " storm " that all of us are in.

I say this because I too have experienced some of the hardships your

husband is experiencing, especially with the prednisone. I have

recently refused the IV treatment for the same reasons you husband

has. So I do know first hand the impact of this decision.

The toll this disease has taken on my wife and family is very

painful.

So, I say this to say, " I am so sorry this has happened to us. "

God bless you, your husband and your entire family with blessings of

healing and strength.

Your brother and friend in Jesus.

Amen

In Christ,

>

> My husband was diagnosed with neurosarcoidosis last July. He had

> been suffering numbness, facial palsy, seizures, migranes,

> hallucination and all the bad stuff that comes with this awful

> disease. He was very inflamed when we finally got him to the Mayo

> Clinic were they diagnosed him. They told us he would probably

have

> to be on meds for 12 to 16 months before he would be somewhat back

> to normal. Well he has been on meds for 14months now and has got

> somewhat better but defineatly not living a normal life. He takes

> Kepra for the seizures and Prednisone for the brain swelling. He is

> also on methotrexate which makes him very sick to his stomach every

> weekend. Having been on prednisone for so long he has suffered the

> side affects of weight gain, depression, high blood pressure, high

> colesteral, extreme mood swings and just started to get toxic with

> breakouts all over his skin. With all the side effects he decided

> to stop taking the prednisone and within a month all of his symtoms

> are coming back. We have been trying to get approved for remicaid

> which I hear works miracles when combined with methotrexate but was

> denied by the insurance company because it is still considered

> experimental. He cant go to work because he is always exhausted or

> has a head ache. Unfortunatly he is going back on the prednisone

> because nothing else seems to work. What worries us is is he going

> to die from the side affects of the prednisone first rather than

the

> disease. No one understands what we go through because they see

him

> and he doesn't look sick. Just like people suffering MS. He is

> tired of being sick and taking all of this medicine which doesnt

> make him feel any better only worse. Will this ever end. We have

> seen neurologist, rhuemetologist, specialist and no one has an

> answer because they still dont know what causes it. They only know

> to keep shoving steriods down our throat. I am tired and

frustrated

> and cant keep living like this. Any help of advice would be

greatly

> appreciated. I am trying to stay positive and strong but it gets

> harder every day I have to watch my husband hold his head and cry

in

> pain and don't know what to do for him. HELP!!

>

November 11, 2005