Re: Hello all

[Guest guest]

Welcome, I'm sorry you had to find us, but you will find great support here.   In answer to your question:  Yes, I have had all the symptoms you mentioned, and so have many others, that we probably be sharing

their story with you too.  Will it get better, probably not without treatment, Are you on anything? I have been on several drugs, and am now on Remicade,  The best drug for me so far, not the same for everyone.  I still have some of the

symptoms, but was once walking with a cane, unable to stairs, and needed help just to get out of bed, still do sometimes, but not all the time.  I am still unable to walk very far, for this I use a wheelchair,

or just avoid walking too much.  What medications are you on, and how long have you been on them? Please feel free to ask any questions,  and know we are here for you. However, we too are all dealing with this disease, so sometimes it

may take longer to get back to you, but we will.  Welcome.  Marla

I am new to this group...I have been unofficially diagnosed with

Neurosarcoidosis..@ least that is what my neurologist thinks..All I

know is that on Oct 6, 2008 my life changed..I woke up dizzy..off

balance..unable to focus..blurred vision.. & it got progressively

worst...I then noticed weakness in my right leg that then went to my

left..now I am unable to walk up stairs I now walk with a cane & I need

help getting out of bed...it's as if my muscles were shredded in a

blender and now I don't have any strength.. Can anyone let me know if

they experienced the same problems as me,, and will it get better?

Thanks for listening!

[Guest guest]

njones,

First of all my name is Greg. Was diag. with Neurosarcoidosis in May of

2008. CRT and MRi scans showed 4 granunomlas (?) around the Brain and 5

around the brain stem. I am on predisone down from 60mg to 20mg. I have

constant headache and if I move too fast vertigo sets in and I crash.

Sometimes vertigo sets in for no reason. There are days when I feel

100% again. But the they are nice days. scale of 1-10 my normal days is

a pain level 3-4. Now saying al of that. I want to tell you the best

advice I ever got was to stay postive. And live in a postive attitude.

If you were in Texas I would suggest setting and appointment with Univ.

of Texas S.W, I have learned that they are the best in Texas for

treating and control this monster.

May you be blessed with many pain free days.

p.s You have joined the right group here to stay postive. I have found

these people to be extremely supportive and informative.

Greg

>

> I am new to this group...I have been unofficially diagnosed with

> Neurosarcoidosis..@ least that is what my neurologist thinks..All I

> know is that on Oct 6, 2008 my life changed..I woke up dizzy..off

> balance..unable to focus..blurred vision.. & it got progressively

> worst...I then noticed weakness in my right leg that then went to my

> left..now I am unable to walk up stairs I now walk with a cane & I

need

> help getting out of bed...it's as if my muscles were shredded in a

> blender and now I don't have any strength.. Can anyone let me know if

> they experienced the same problems as me,, and will it get better?

> Thanks for listening!

>

[Guest guest]

Hi Mona, The Pred. will probably work, it usually does, the side effects are hard to deal with, I hope he went over those with you, you can scroll down to links below, and got into the links and find a lot of information,  if you scroll through the

links you will find some on Pred. Of course we all act differently to different meds, I didn't have too much trouble with it, until I had been on it for too long.  I hope this works for you, but it is not a long term fix, and your

doctor should be looking into a long term drug.  Blessings, Marla 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)

Hello, I went to my doctor yesterday. They are hoping the infection I had in my lungs is better. Now the doctor is going to start the treatment on the sarcoid. They say its in the second stage pretty much everywhere in the lungs. He is starting me on a high dose of pred.. 50 mg which he said is hard. He told me that Im going to go throught a hard time. One of my problems is getting my family to understand.  Were you treated with this? did it help at all? I just hope it does. I have to say im scared. I know the next 4-6 months will be hard. thanks for listening to me please if anyone can help me understand more about all this please do so      Mona

I am new to this group...I have been unofficially diagnosed with Neurosarcoidosis. .@ least that is what my neurologist thinks..All I know is that on Oct 6, 2008 my life changed..I woke up dizzy..off balance...unable to focus..blurred vision.. & it got progressively

worst...I then noticed weakness in my right leg that then went to my left..now I am unable to walk up stairs I now walk with a cane & I need help getting out of bed...it's as if my muscles were shredded in a

blender and now I don't have any strength.. Can anyone let me know if they experienced the same problems as me,, and will it get better? Thanks for listening!

[Guest guest]

I was in your shoes almost one year earlier than you. My neuro started me on prednisone 60 mg. When my MRI showed no new granulomas, he began to taper my dosage and added CellCept. Today I'm completely off the pred but continue the CellCept. I noticed a big improvement in my balance and cognitive functions once I started the CellCept. It does take a couple of months to really begin to see the effects of the CellCept though.

Best of luck to you,

E-mail message checked by Spyware Doctor (6.0.0.386)Database version: 5.11850http://www.pctools.com/spyware-doctor-antivirus/

[Guest guest]

Hi guys,

I too used to have vertigo when my sarcoid first began. I would be so dizzy that I would get up try to walk to the bathroom and would start to fall down. My mom and family noticed that I was about to go down and would help me wherever I need to go.

I must say that I haven't experineced it to this degree since it first began. I still don't know if it was my meds or just something going on in my brain. At the time I was taking neurotin, prednisone, snd some over the counter meds for stomach. I no longer suffer from it as badly now. Every now and then I do have a weak spell where I feel like I can't see without these specks floating around but it quickly goes away. I also used to have really bad headaches when it first began but now I just have an occassional headache. Thank God!! Those things where terrible I could see straight. But now I think maybe stress is causing the headaches and high blood pressure from so much weight gain. I am working on it though.

Shauna in Atl.

[Guest guest]

Terri G,

First congrats Grandma. Second take care of yourself I am glad to hear from

you again. ANd also know that you are in our prayers also.

Greg

>

>

> Hey Guys,

>

> I have been lurking a lot. I won't go in to all of the details but

> suffice it to say things have been very hectic. I haven't really had

> the chance to write but I am now a grandma. Braden s was

> born on the 19th of February. He weighed in at 7 lb 10 oz and 22 in

> long. He is beautiful.

>

> Unfortunately, I am sick and cannot see him. I have been on

> methotrexate for awhile now and I must have picked up a germ somewhere

> and cannot quite seem to get over it. I am on my second antibiotic and

> prednisone to help reduce the inflammation in my lungs.

>

> I have been keeping everyone in my prayers and hello to all of the new

> members. You have found a great place and a great group of people to

> understand all of your issues.

>

> Will check in with everyone soon. Take care of yourselves and know I

> think about you guys all the time.

>

> Love - Terri G.

>

[Guest guest]

Terri,

A grandson! Awesome. I'm sure that you'll be holding this little one soon. Keep the faith!

Hugs,

Tracie

NS Co-owner/moderator

Subject: Re: Hello AllTo: Neurosarcoidosis Date: Thursday, March 12, 2009, 5:21 PM

Terri G,First congrats Grandma. Second take care of yourself I am glad to hear from you again. ANd also know that you are in our prayers also.Greg >> > Hey Guys,> > I have been lurking a lot. I won't go in to all of the details but> suffice it to say things have been very hectic. I haven't really had> the chance to write but I am now a grandma. Braden s was> born on the 19th of February. He weighed in at 7 lb 10 oz and 22 in> long. He is beautiful.> > Unfortunately, I am sick and cannot see him. I have been on> methotrexate for awhile now and I must have picked up a germ somewhere> and cannot quite seem to get over it. I am on my second antibiotic

and> prednisone to help reduce the inflammation in my lungs.> > I have been keeping everyone in my prayers and hello to all of the new> members. You have found a great place and a great group of people to> understand all of your issues.> > Will check in with everyone soon. Take care of yourselves and know I> think about you guys all the time.> > Love - Terri G.>

[Guest guest]

Terri Congratulations. A grandson, wow great. But you take care of you so you can hold and kiss him all you want. I have 4 grandkids.

Jackie

Re: Hello All

Terri G,First congrats Grandma. Second take care of yourself I am glad to hear from you again. ANd also know that you are in our prayers also.Greg >> > Hey Guys,> > I have been lurking a lot. I won't go in to all of the details but> suffice it to say things have been very hectic. I haven't really had> the chance to write but I am now a grandma. Braden s was> born on the 19th of February. He weighed in at 7 lb 10 oz and 22 in> long. He is beautiful.> > Unfortunately, I am sick and cannot see him. I have been on> methotrexate for awhile now and I must have picked up a germ somewhere> and cannot quite seem to get over it. I am on my second antibiotic and> prednisone to help reduce the inflammation in my lungs.> > I have been keeping everyone in my prayers and hello to all of the new> members. You have found a great place and a great group of people to> understand all of your issues.> > Will check in with everyone soon. Take care of yourselves and know I> think about you guys all the time.> > Love - Terri G.>

[Guest guest]

Congrats on the new grandson! Hope you get to see him soon. Take good care of yourself and maybe if we get some warm weather soon you'll be feeling better. hugs! S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV)."No one whose hope is in You will ever be put to shame….Show me Your ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and My hope is in You all day long." Psalm 25:3,4,5 NIVSubject: Hello AllTo: Neurosarcoidosis Date: Friday, March 13, 2009, 12:11 AM

Hey Guys,

I have been lurking a lot. I won't go in to all of the details but

suffice it to say things have been very hectic. I haven't really had

the chance to write but I am now a grandma. Braden s was

born on the 19th of February. He weighed in at 7 lb 10 oz and 22 in

long. He is beautiful.

Unfortunately, I am sick and cannot see him. I have been on

methotrexate for awhile now and I must have picked up a germ somewhere

and cannot quite seem to get over it. I am on my second antibiotic and

prednisone to help reduce the inflammation in my lungs.

I have been keeping everyone in my prayers and hello to all of the new

members. You have found a great place and a great group of people to

understand all of your issues.

Will check in with everyone soon. Take care of yourselves and know I

think about you guys all the time.

Love - Terri G.

[Guest guest]

Greg,

Thanks so much; am under the weather with some type of respiratory thing

but hopefully things will turn around soon. Can't wait to spend more

time with my grandson.

Terri

> >

> >

> > Hey Guys,

> >

> > I have been lurking a lot. I won't go in to all of the details but

> > suffice it to say things have been very hectic. I haven't really had

> > the chance to write but I am now a grandma. Braden s was

> > born on the 19th of February. He weighed in at 7 lb 10 oz and 22 in

> > long. He is beautiful.

> >

> > Unfortunately, I am sick and cannot see him. I have been on

> > methotrexate for awhile now and I must have picked up a germ

somewhere

> > and cannot quite seem to get over it. I am on my second antibiotic

and

> > prednisone to help reduce the inflammation in my lungs.

> >

> > I have been keeping everyone in my prayers and hello to all of the

new

> > members. You have found a great place and a great group of people to

> > understand all of your issues.

> >

> > Will check in with everyone soon. Take care of yourselves and know I

> > think about you guys all the time.

> >

> > Love - Terri G.

> >

>

[Guest guest]

Tracie

He is so huggable but I can't stand not being able to see him when I am

sick.

Terri

> >

> >

> > Hey Guys,

> >

> > I have been lurking a lot. I won't go in to all of the details but

> > suffice it to say things have been very hectic. I haven't really had

> > the chance to write but I am now a grandma. Braden s was

> > born on the 19th of February. He weighed in at 7 lb 10 oz and 22 in

> > long. He is beautiful.

> >

> > Unfortunately, I am sick and cannot see him. I have been on

> > methotrexate for awhile now and I must have picked up a germ

somewhere

> > and cannot quite seem to get over it. I am on my second antibiotic

and

> > prednisone to help reduce the inflammation in my lungs.

> >

> > I have been keeping everyone in my prayers and hello to all of the

new

> > members. You have found a great place and a great group of people to

> > understand all of your issues.

> >

> > Will check in with everyone soon. Take care of yourselves and know I

> > think about you guys all the time.

> >

> > Love - Terri G.

> >

>

[Guest guest]

Jackie

Thank you so much; he is so beautiful. His cousin, Emma Grace is due in

April. Woohoo, a grandson and grandaughter in 3 months time. I can't

ask fo rmore.

Terri G.

> >

> >

> > Hey Guys,

> >

> > I have been lurking a lot. I won't go in to all of the details but

> > suffice it to say things have been very hectic. I haven't really had

> > the chance to write but I am now a grandma. Braden s was

> > born on the 19th of February. He weighed in at 7 lb 10 oz and 22 in

> > long. He is beautiful.

> >

> > Unfortunately, I am sick and cannot see him. I have been on

> > methotrexate for awhile now and I must have picked up a germ

somewhere

> > and cannot quite seem to get over it. I am on my second antibiotic

and

> > prednisone to help reduce the inflammation in my lungs.

> >

> > I have been keeping everyone in my prayers and hello to all of the

new

> > members. You have found a great place and a great group of people to

> > understand all of your issues.

> >

> > Will check in with everyone soon. Take care of yourselves and know I

> > think about you guys all the time.

> >

> > Love - Terri G.

> >

>

[Guest guest]

,

Thank you so much. I don't know if I have ever told you but I have a

wall hanging in my living room with 29:11 on it. I look at it

every day to help me keep the faith. I also wear a bracelet with

Philippians 4:13 on it too.

Terri.

> From: mosaicgirl1 mosaicgirl1@...

> Subject: Hello All

> To: Neurosarcoidosis

> Date: Friday, March 13, 2009, 12:11 AM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hey Guys,

>

>

>

> I have been lurking a lot. I won't go in to all of the details but

>

> suffice it to say things have been very hectic. I haven't really had

>

> the chance to write but I am now a grandma. Braden s was

>

> born on the 19th of February. He weighed in at 7 lb 10 oz and 22 in

>

> long. He is beautiful.

>

>

>

> Unfortunately, I am sick and cannot see him. I have been on

>

> methotrexate for awhile now and I must have picked up a germ somewhere

>

> and cannot quite seem to get over it. I am on my second antibiotic and

>

> prednisone to help reduce the inflammation in my lungs.

>

>

>

> I have been keeping everyone in my prayers and hello to all of the new

>

> members. You have found a great place and a great group of people to

>

> understand all of your issues.

>

>

>

> Will check in with everyone soon. Take care of yourselves and know I

>

> think about you guys all the time.

>

>

>

> Love - Terri G.

>

[Guest guest]

Connie,

Thank so much. I want them to call me Granny T I think cause my

daughters-in-law call me Momma T. Thought it would fit but they can

call me whatever they want. My nephew doesn't call my Mom granny or

grandma - he calls her Benina - go figure.

Take care.

Terri

> >

> > From: mosaicgirl1 mosaicgirl1@ ...

> > Subject: Hello All

> > To: Neurosarcoidosis@ yahoogroups. com

> > Date: Thursday, March 12, 2009, 8:11 PM

> >

> >

> >

> >

> >

> >

> >

> > Hey Guys,

> >

> > I have been lurking a lot. I won't go in to all of the details but

> > suffice it to say things have been very hectic. I haven't really had

> > the chance to write but I am now a grandma. Braden s was

> > born on the 19th of February. He weighed in at 7 lb 10 oz and 22 in

> > long. He is beautiful.

> >

> > Unfortunately, I am sick and cannot see him. I have been on

> > methotrexate for awhile now and I must have picked up a germ

somewhere

> > and cannot quite seem to get over it. I am on my second antibiotic

and

> > prednisone to help reduce the inflammation in my lungs.

> >

> > I have been keeping everyone in my prayers and hello to all of the

new

> > members. You have found a great place and a great group of people to

> > understand all of your issues.

> >

> > Will check in with everyone soon. Take care of yourselves and know I

> > think about you guys all the time.

> >

> > Love - Terri G.

> >

>

[Guest guest]

I know what you mean, you really don't care what they call you as long you get those sweet little kisses, the long conversations where only one of you knows what's being said, and the time to look at their sweet little faces while you rock them and they sleep.

Needless to say this Nonnie thinks her grandkids are the bomb...Connie

Subject: Re: Hello AllTo: Neurosarcoidosis Date: Monday, March 16, 2009, 9:46 PM

Connie,Thank so much. I want them to call me Granny T I think cause mydaughters-in- law call me Momma T. Thought it would fit but they cancall me whatever they want. My nephew doesn't call my Mom granny orgrandma - he calls her Benina - go figure.Take care.Terri> >> > From: mosaicgirl1 mosaicgirl1@ ...> > Subject: Hello All> > To: Neurosarcoidosis@ yahoogroups. com> > Date: Thursday, March 12, 2009, 8:11 PM> >> >> >> >> >> >> >> > Hey Guys,> >> > I have been lurking a lot. I won't go in to all of the details but> > suffice it to say things have been very hectic. I haven't

really had> > the chance to write but I am now a grandma. Braden s was> > born on the 19th of February. He weighed in at 7 lb 10 oz and 22 in> > long. He is beautiful.> >> > Unfortunately, I am sick and cannot see him. I have been on> > methotrexate for awhile now and I must have picked up a germsomewhere> > and cannot quite seem to get over it. I am on my second antibioticand> > prednisone to help reduce the inflammation in my lungs.> >> > I have been keeping everyone in my prayers and hello to all of thenew> > members. You have found a great place and a great group of people to> > understand all of your issues.> >> > Will check in with everyone soon. Take care of yourselves and know I> > think about you guys all the time.> >> > Love - Terri G.>

>>

[Guest guest]

Mona, I am so sorry you are flairing right now, I do know the moderators know of alot of alternatives to prednisone, and they have terrific advice. Stress and panick aggrevate our illness like crazy, and when your on predisone (as I know first hand); it is really hard not to stress, but try. Take care, and know that the people on this site will do all they can to help you. Connie

Subject: Hello AllTo: Neurosarcoidosis Date: Wednesday, April 1, 2009, 12:41 AM

This past week has been so bad for me. The prednisone is really messing me up bad. I'm starting to swell in my face real bad and in my feet. My moods are so bad. One minute I feel like climbing the wall's the next, depressed and in tear's. I get confussed alot to. As I've said the sarcoid is in my lung's. I guess my question is does it effect you all over your body in someways even though it's only been seen there? There is so many many unanswered Question's I have about all of this still. I'm still scared in many way's. I feel like my family sometime's get tired of me alway's finding some new kind of problem almost everyday. It's been about 2 month's since my doctor said oh it's back second stage we have to hit it hard, so it does seem like there is a new problem everyday now, I haven't had to face it like this before now. I feel like I have a long road ahead, I worry about the long term prednisone

I may have to take, right now he said maybe 2 month's at 50mg, but by everyone I've read about or talked to it has been alot's longer. Is there any advise out there that any of you can send to my family and maybe help them to see what a nightmare this is to all that has it. I worry about how they feel. I know there are many question's they have also and I'm not much help at all right now. Please if anyone can help out with my family and help them understand alittle more please write them I will make sure they read it. thank you Mona

[Guest guest]

Hey Jackie, I'm certainly once again behind on emails, I have skin sarcoid, one time I had a terrible rash all over and it burned like you know what, but mostly from the inside out, like someone lit a match and threw it in my body. I went on IV steroids

for 3 days and it got better, now I get lesions all over, and they too burn, they come and go.  I still get rashes too, onlynot so bad, I think there better because I am on Remicade.  I also got this great ointment, called Protopic, that I use it

when the lesions bother me. They are worse when I am tired.  Take care, Marla  

I awoke this morning with a kind of rash on my back and leg.  So being the person I am I began to worry.  Can anyone tell me about skin sarc.  How it looks when it starts.  Where does it usually start.  anything else you can clue me in on would be great.

Jackie