Re: new to disease

[Guest guest]

Hi Barb,

Welcome to the family---- we adopt sarcoidians well, and I know you'll get a tremendous amount of support from a whole lot of us.

As for the sarc "sucking" - we often refer to this disease as suckoidosis.

The Cleveland Clinic is supposed to be excellant, and I believe that is where Dr. Baughman is. He is one of the foremost experts in sarcoidoisis, and can help you get this under control.

Imuran is one of first immunosuppresants they like to try when you need to get off the prednisone-- and sometimes it helps. I wasn't able to take that one, but have had success with a combination of Plaquenil, Methotrexate and Remicade. This combo has worked very well for me, up until this last summer when California caught fire. We were literally a ridge top away - about 2 miles from the worst of it. The smoke has put me back into needing supplemental o2 24/7-- and I've started having problems with pulmonary hypertension. (My heart needs more oxygen than my lungs can send out, so the main artery that goes from the lungs to the heart is thickening and narrowing from the inside, and that creates a high possibility of blood clots in either the heart or lungs.) I am noticing that I have more inflammation in the lungs and around my heart for a couple of days before my Remicade infusion-- so whether it's the

lymphs or inflammation of the heart sac-- is a puzzle to be figured out.

I've lived with sarc for 18 yrs-- alot of us have had long journeys with it-- so don't worry about it killing you. Focus on getting it as "under control" as you can-- and doing what you can to stay active.

You are welcome to ask questions, look in the MESSAGE ARCHIVES, and our LINK library. We have a tremendous number of articles on just about any issue that comes up and if one of us can't get to the board right away, we will check daily and someone will answer your questions, or send you a link to different articles.

All the moderators and owners of the group are living with this disease, and we are all in various forms of flares-- so sometimes it is necessary for us to tagteam. I'm "resting" right now-- actually, I'm strung out tonight from my infusion-- so in the next couple of days-- I'll be crashed out for the weekend. At least I'll be in a better place for Christmas next week.

At the bottom of this and each email we send out is a section called the "neurosarcoidosis community" and it has the links to the ARCHIVES and LINKS.

I'll send it via a second email so that if you have a filter that blocks that part-- you can save it to your favorites.

Take care, and ask away--

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Wednesday, December 17, 2008 7:02:59 PMSubject: new to disease

hello everyone, my name is barb i am 38 and am new to this disease. i was just diagnosed in august 08 after battling with iritis and arthris which then found completly on a fluke was sarcoidosis inthe lung. by the time this was found it was in my spine and brain. i am a women of great faith in god so i know i will get through this as will all of you. i was on massive doses of prednisone which i am sure you all familar with ,with not much sucess in the whole spine and walking thing. after trying imuran and unable to keep it down my doctors are sending me to cleveland clinic.everyone says to stay positive but it possitivly sucks!! any advice on how to use this sup;port group would be great. i took some time to view pics and read others emails that were sent . i would love to become a part of this family because i need all the support that i can get.hope to hear from someone soon.

barb

[Guest guest]

Hi Barb, Welcome to our Sarc family, we all share many of the same symptoms and trials, I have had Sarc for 14 years, first my lungs, then my skin, now my brain and spine, yes it positively SUCKS, but together we get through it. I know the massive doses of steroids been there too, for 3 years, gained the weight, etc. I am now on Remicade every 5 weeks, and this is really helping me, my brain fog is gone and I have more energy, my legs still have there limits, but I'm happy to be thinking again.

You have found a very loving, caring, family here, however if you don't hear from someone right away, it's because we too are sick. If you scroll down to the bottom of the page, you will see the archives, go there and you can do a lot of reading on many subjects, medication too. I am sorry you have to deal with this ugly disease, but you have found the right place for answers, support, vent, and many other things, we are here to support each other, and there's a lot of supportive people here! Welcome, please feel free to ask, vent, cry, or whatever you like, just remember if you do not get an instant response, it's because we like you have good and bad days.

Welcome, Marla

hello everyone, my name is barb i am 38 and am new to this disease. i

was just diagnosed in august 08 after battling with iritis and arthris

which then found completly on a fluke was sarcoidosis inthe lung. by

the time this was found it was in my spine and brain. i am a women of

great faith in god so i know i will get through this as will all of

you. i was on massive doses of prednisone which i am sure you all

familar with ,with not much sucess in the whole spine and walking

thing. after trying imuran and unable to keep it down my doctors are

sending me to cleveland clinic.everyone says to stay positive but it

possitivly sucks!! any advice on how to use this sup;port group would

be great. i took some time to view pics and read others emails that

were sent . i would love to become a part of this family because i need

all the support that i can get.hope to hear from someone soon. barb

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

[Guest guest]

Hey Barb

Welcome to the group. It is rotten way to meet but Glad you found all of us.

I have had NS since 2005. I went from working one day to having to take a leave ,because of vertigo , the next day.

Then I went into the UW Hospital for a month. I was not able to move anything but my head. ARGH I wasn't sure I could make it. I then went to the Nursing Home I had worked at, I thought to die. I had the wonderful care that I remembered giving to others. I also had the most wonderful therapist to work with. I went home after 5 months. I couldn't walk or even toilet myself but I kept pushing. Therapy and a wonderful family kept me going. I can now do all my own cares, I am driving again and I am walking. Short distance but I walk. I rely on my wheel chair but walk when I can. I feel I have made such progress with the help from God and the understanding and love from my family and this wonderful group. I am glad I found them. The owner/moderators will go the extra mile to help you understand and find out all about this monster we all share.

I come here to cry, vent, laugh, and get understanding. Love is a big part of this group. We are all here to listen, help and support.

Me myself I tend to run on but you will get used to that.

Again Welcome and you are in my prayers.

Jackie

new to disease

hello everyone, my name is barb i am 38 and am new to this disease. i was just diagnosed in august 08 after battling with iritis and arthris which then found completly on a fluke was sarcoidosis inthe lung. by the time this was found it was in my spine and brain. i am a women of great faith in god so i know i will get through this as will all of you. i was on massive doses of prednisone which i am sure you all familar with ,with not much sucess in the whole spine and walking thing. after trying imuran and unable to keep it down my doctors are sending me to cleveland clinic.everyone says to stay positive but it possitivly sucks!! any advice on how to use this sup;port group would be great. i took some time to view pics and read others emails that were sent . i would love to become a part of this family because i need all the support that i can get.hope to hear from someone soon. barb

[Guest guest]

Barb,

I want you to know you have come to right place. The people are

understanding and compassionate people I have ever come across. I am

on my second flare up of NS. Prior to this flare I thought I handle it

all by myself, but this flare has taught my some real tough lessons.

Fortunately I have found this group wonderful. I feel so blessed to

have found them. My suggestion is to always stay positive. This

attitude has helped me to handle the second flare up. For I know for a

fact that will learn to control this monster and get back to work. OOO

yeah I am a workaholic. Now I wish you and your family a Blessed

Holiday and Pain-Free Christmas.

Greg

>

> hello everyone, my name is barb i am 38 and am new to this disease. i

> was just diagnosed in august 08 after battling with iritis and arthris

> which then found completly on a fluke was sarcoidosis inthe lung. by

> the time this was found it was in my spine and brain. i am a women of

> great faith in god so i know i will get through this as will all of

> you. i was on massive doses of prednisone which i am sure you all

> familar with ,with not much sucess in the whole spine and walking

> thing. after trying imuran and unable to keep it down my doctors are

> sending me to cleveland clinic.everyone says to stay positive but it

> possitivly sucks!! any advice on how to use this sup;port group would

> be great. i took some time to view pics and read others emails that

> were sent . i would love to become a part of this family because i need

> all the support that i can get.hope to hear from someone soon. barb

>