Re: Good day to everyone,,, from

[Guest guest]

,

My dear sister you are in my prayers. It is understandable why you been so

quiet. I have not experienced what you have at this time. But my empathy reaches

out to you. I do understand the memory issues ny memory is like swiss cheese. If

did not keep a dairy I would not know or remember what I did yesterday. I will

double my prayers for you, and I will keep your issues in front of to remember

to pray daily for you. you are my sister in neurosarcoidosis. Ask and I

will give any support possible to you.

May you blessed with pain free days and may you be blessed and strength in your

hour of need.

Greg aka Krumdawg

>

> greetings..

> As Rose has said I have been quiet, and that is true. I am in a depression.

let me see were I can start, well as I said before I have been switched from

Imuran to Cellcept about 8 wks ago, and as far this med, having lose of my hair,

my feet and hands swelled twice there size and my feet turning purple,, it is

doing nothing for my head pain,, I have been to the ER 3 times since i've been

off the Imuran for dalaudid 2mg injection. the cellcept - It has been much

better help with the arm and leg and back and neck pain.. but not completely

gone.

> My cognitive problems are getting worse,, sherif, has told my Neuro Dr Ross

that I keep repeating myself,, to the point that it is 4-5 times I go over

things. And I really do not know I am doing it. My short term memory has always

been gone. when I was first dxd 2001 the Neuro-pyshic dr did testing and said

my short term memory was done for. for the longest time with cognitive theraphy

i've learned how to store it in long term memory, well as you know the brain

does it.. but she has taught me how to help it along. ... Well I feel like it is

not working anymore. for about 5 weeks i've noticed that when I chew my eye's

hurt... and I go to the eye dr every six months as you know being on the

Plaquneil that is a have too. and back in sept he told me the pressure in my

eyes were 23, which is slightly above normal, and I was having trouble focusing

on things up close.. he said right away it is time for bi-focals.. talk about

feeling old. lol. so I got the glasses, and my stigamistim was slightly worse

than before, I can't drive at night at all.

> well I went to the eye dr 10 days ago and he said my pressure is 28 in my eyes

now , and one eye went farsighted and one nearsighted. and both eyes have

different precriptions.. talk about weird eyes now. So to try and give me the

best correction I went to contacts again, I had to laugh he gave 2 pair of

contacts and each contact had different things to them.. so he said for the next

ten days to switch them around and see what is the best correction and best fit

due to the stigmatism they hurt my eyes. So I went back after 10 days and he

checked the pressure and it is still 28 so he did the field vision test and I

failed.. I told him everything kept going black.. so he looked real good at the

back of my eyes and said the good thing is your eyes look very healthy.. was a

plus,, so he said to go 10 more days without contacts and try to go without my

glasses when I can. And when I return on tues, he will recheck the pressure and

do another field vision test and diulate my eyes again. When he started to talk

about the scaring he sees on my eyes.. and Glochoma(spelling) sorry, this really

scared me. With all my organs affected by the NS , except for my kidneys were

the only two organs that are still healthy. now my eyes are going to Hell! Than

I had my chest cat-scan w/contrast and my hands N feet N pelvis x-rays and I am

still waiting to hear how they were.

> ontop of that I was watching Dr G. the Medical examiner on tv and a women died

suddenly at 32, and she was dxd with Lupus 8 yrs ago.. but was told it was

mild.. and when she did her exam her organs were totally ruined by the steriod

and immusuppressant drugs. .. I guess it was the wrong time to see that show..

So I have been hardly been able to keep from crying all the time, I was down to

..25mg of xanax in the morning for the longest time.. and now I need 1mg to keep

from having contant panic attacks. I really think I am going to die.

> I try to talk to Sherif, and he is a help meaning an ear to listen but since

he does not have this illness it is hard for him to understand what I am going

through..

> so that is why I have been so quiet,, and that is not me I always try to

answer questions for new people and so concern for everyone, but as I said I

constantly feely like I am going to die and feel like I am crawling out of my

skin so than I dope myself with the xanax..

> I hope all is well with everyone and is having a pain free day.... miss and

love you all..

>

> Many Blessings A.

>

[Guest guest]

I am so sorry for all you are going through. Please know you are in my thoughts and prayers.

We all miss you and are hoping you will soon receive some good news and comfort.

Take care you yourself.

Jackie

Good day to everyone,,, from

greetings..

As Rose has said I have been quiet, and that is true. I am in a depression. let me see were I can start, well as I said before I have been switched from Imuran to Cellcept about 8 wks ago, and as far this med, having lose of my hair, my feet and hands swelled twice there size and my feet turning purple,, it is doing nothing for my head pain,, I have been to the ER 3 times since i've been off the Imuran for dalaudid 2mg injection. the cellcept - It has been much better help with the arm and leg and back and neck pain.. but not completely gone.

My cognitive problems are getting worse,, sherif, has told my Neuro Dr Ross that I keep repeating myself,, to the point that it is 4-5 times I go over things. And I really do not know I am doing it. My short term memory has always been gone. when I was first dxd 2001 the Neuro-pyshic dr did testing and said my short term memory was done for. for the longest time with cognitive theraphy i've learned how to store it in long term memory, well as you know the brain does it.. but she has taught me how to help it along. ... Well I feel like it is not working anymore. for about 5 weeks i've noticed that when I chew my eye's hurt... and I go to the eye dr every six months as you know being on the Plaquneil that is a have too. and back in sept he told me the pressure in my eyes were 23, which is slightly above normal, and I was having trouble focusing on things up close.. he said right away it is time for bi-focals.. talk about feeling old. lol. so I got the glasses, and my stigamistim was slightly worse than before, I can't drive at night at all.

well I went to the eye dr 10 days ago and he said my pressure is 28 in my eyes now , and one eye went farsighted and one nearsighted. and both eyes have different precriptions.. talk about weird eyes now. So to try and give me the best correction I went to contacts again, I had to laugh he gave 2 pair of contacts and each contact had different things to them.. so he said for the next ten days to switch them around and see what is the best correction and best fit due to the stigmatism they hurt my eyes. So I went back after 10 days and he checked the pressure and it is still 28 so he did the field vision test and I failed.. I told him everything kept going black.. so he looked real good at the back of my eyes and said the good thing is your eyes look very healthy.. was a plus,, so he said to go 10 more days without contacts and try to go without my glasses when I can. And when I return on tues, he will recheck the pressure and do another field vision test and diulate my eyes again. When he started to talk about the scaring he sees on my eyes.. and Glochoma(spelling) sorry, this really scared me. With all my organs affected by the NS , except for my kidneys were the only two organs that are still healthy. now my eyes are going to Hell! Than I had my chest cat-scan w/contrast and my hands N feet N pelvis x-rays and I am still waiting to hear how they were.

ontop of that I was watching Dr G. the Medical examiner on tv and a women died suddenly at 32, and she was dxd with Lupus 8 yrs ago.. but was told it was mild.. and when she did her exam her organs were totally ruined by the steriod and immusuppressant drugs. .. I guess it was the wrong time to see that show.. So I have been hardly been able to keep from crying all the time, I was down to .25mg of xanax in the morning for the longest time.. and now I need 1mg to keep from having contant panic attacks. I really think I am going to die.

I try to talk to Sherif, and he is a help meaning an ear to listen but since he does not have this illness it is hard for him to understand what I am going through..

so that is why I have been so quiet,, and that is not me I always try to answer questions for new people and so concern for everyone, but as I said I constantly feely like I am going to die and feel like I am crawling out of my skin so than I dope myself with the xanax..

I hope all is well with everyone and is having a pain free day.... miss and love you all..

Many Blessings A.

Refinance and lower payments online with Ditech. Visit www.ditech.com Today!

[Guest guest]

,

I too am on the cellcept- I have been on it for 8 weeks. I think we started at

about the same time. I also have the same side effects- losing my hair, swollen

hands and feet, and terrible headaches every day. I get tingling in my throat

and am having short term memory issues. My eye pressure was also up when I went

to see neuro-opthalmology. I hate this disease! I go back to my sarc doc

tomorrow and am nervous. I am scared he will tell me it is getting worse! I have

also been having twitching on the right side of my face which worries me. My

twitching/paralysis was always on the left side.

I hope things get better for you! You are in my thoughts and prayers! Please

know that you are not alone!

Dawn

> >

> > greetings..

> > As Rose has said I have been quiet, and that is true. I am in a depression.

let me see were I can start, well as I said before I have been switched from

Imuran to Cellcept about 8 wks ago, and as far this med, having lose of my hair,

my feet and hands swelled twice there size and my feet turning purple,, it is

doing nothing for my head pain,, I have been to the ER 3 times since i've been

off the Imuran for dalaudid 2mg injection. the cellcept - It has been much

better help with the arm and leg and back and neck pain.. but not completely

gone.

> > My cognitive problems are getting worse,, sherif, has told my Neuro Dr Ross

that I keep repeating myself,, to the point that it is 4-5 times I go over

things. And I really do not know I am doing it. My short term memory has always

been gone. when I was first dxd 2001 the Neuro-pyshic dr did testing and said

my short term memory was done for. for the longest time with cognitive theraphy

i've learned how to store it in long term memory, well as you know the brain

does it.. but she has taught me how to help it along. ... Well I feel like it is

not working anymore. for about 5 weeks i've noticed that when I chew my eye's

hurt... and I go to the eye dr every six months as you know being on the

Plaquneil that is a have too. and back in sept he told me the pressure in my

eyes were 23, which is slightly above normal, and I was having trouble focusing

on things up close.. he said right away it is time for bi-focals.. talk about

feeling old. lol. so I got the glasses, and my stigamistim was slightly worse

than before, I can't drive at night at all.

> > well I went to the eye dr 10 days ago and he said my pressure is 28 in my

eyes now , and one eye went farsighted and one nearsighted. and both eyes have

different precriptions.. talk about weird eyes now. So to try and give me the

best correction I went to contacts again, I had to laugh he gave 2 pair of

contacts and each contact had different things to them.. so he said for the next

ten days to switch them around and see what is the best correction and best fit

due to the stigmatism they hurt my eyes. So I went back after 10 days and he

checked the pressure and it is still 28 so he did the field vision test and I

failed.. I told him everything kept going black.. so he looked real good at the

back of my eyes and said the good thing is your eyes look very healthy.. was a

plus,, so he said to go 10 more days without contacts and try to go without my

glasses when I can. And when I return on tues, he will recheck the pressure and

do another field vision test and diulate my eyes again. When he started to talk

about the scaring he sees on my eyes.. and Glochoma(spelling) sorry, this really

scared me. With all my organs affected by the NS , except for my kidneys were

the only two organs that are still healthy. now my eyes are going to Hell! Than

I had my chest cat-scan w/contrast and my hands N feet N pelvis x-rays and I am

still waiting to hear how they were.

> > ontop of that I was watching Dr G. the Medical examiner on tv and a women

died suddenly at 32, and she was dxd with Lupus 8 yrs ago.. but was told it was

mild.. and when she did her exam her organs were totally ruined by the steriod

and immusuppressant drugs. .. I guess it was the wrong time to see that show..

So I have been hardly been able to keep from crying all the time, I was down to

..25mg of xanax in the morning for the longest time.. and now I need 1mg to keep

from having contant panic attacks. I really think I am going to die.

> > I try to talk to Sherif, and he is a help meaning an ear to listen but since

he does not have this illness it is hard for him to understand what I am going

through..

> > so that is why I have been so quiet,, and that is not me I always try to

answer questions for new people and so concern for everyone, but as I said I

constantly feely like I am going to die and feel like I am crawling out of my

skin so than I dope myself with the xanax..

> > I hope all is well with everyone and is having a pain free day.... miss and

love you all..

> >

> > Many Blessings A.

> >

>

[Guest guest]

,

Sorry to hear what you are going through. With the depression, it definitely makes things worse. From my experience , (I have experienced bouts of depression ever since I came down with my illness.), it makes things worse .....nothing to look forward to but more bad days. I hope I don't make you feel worse. I just want you to know that I know where you are coming from.

I know you are going through a lot right now with meds, but is the xanax working? Maybe your dr could prescribe something diff. or additional, (which I have) for this bad period right now.

I hope you start to improve and feel better. Will be thinking of you and praying for you. You are an important part of this family and we all care.

Debbie

Subject: Good day to everyone,,, from To: neurosarcoidosis , witcheswand@...Date: Sunday, June 14, 2009, 5:41 PM

greetings..

As Rose has said I have been quiet, and that is true. I am in a depression. let me see were I can start, well as I said before I have been switched from Imuran to Cellcept about 8 wks ago, and as far this med, having lose of my hair, my feet and hands swelled twice there size and my feet turning purple,, it is doing nothing for my head pain,, I have been to the ER 3 times since i've been off the Imuran for dalaudid 2mg injection. the cellcept - It has been much better help with the arm and leg and back and neck pain.. but not completely gone.

My cognitive problems are getting worse,, sherif, has told my Neuro Dr Ross that I keep repeating myself,, to the point that it is 4-5 times I go over things. And I really do not know I am doing it. My short term memory has always been gone. when I was first dxd 2001 the Neuro-pyshic dr did testing and said my short term memory was done for. for the longest time with cognitive theraphy i've learned how to store it in long term memory, well as you know the brain does it.. but she has taught me how to help it along. ... Well I feel like it is not working anymore. for about 5 weeks i've noticed that when I chew my eye's hurt... and I go to the eye dr every six months as you know being on the Plaquneil that is a have too. and back in sept he told me the pressure in my eyes were 23, which is slightly above normal, and I was having trouble focusing on things up close.. he said right away it is time for bi-focals..

talk about feeling old. lol. so I got the glasses, and my stigamistim was slightly worse than before, I can't drive at night at all.

well I went to the eye dr 10 days ago and he said my pressure is 28 in my eyes now , and one eye went farsighted and one nearsighted. and both eyes have different precriptions. . talk about weird eyes now. So to try and give me the best correction I went to contacts again, I had to laugh he gave 2 pair of contacts and each contact had different things to them.. so he said for the next ten days to switch them around and see what is the best correction and best fit due to the stigmatism they hurt my eyes. So I went back after 10 days and he checked the pressure and it is still 28 so he did the field vision test and I failed.. I told him everything kept going black.. so he looked real good at the back of my eyes and said the good thing is your eyes look very healthy.. was a plus,, so he said to go 10 more days without contacts and try to go

without my glasses when I can. And when I return on tues, he will recheck the pressure and do another field vision test and diulate my eyes again. When he started to talk about the scaring he sees on my eyes.. and Glochoma(spelling) sorry, this really scared me. With all my organs affected by the NS , except for my kidneys were the only two organs that are still healthy. now my eyes are going to Hell! Than I had my chest cat-scan w/contrast and my hands N feet N pelvis x-rays and I am still waiting to hear how they were.

ontop of that I was watching Dr G. the Medical examiner on tv and a women died suddenly at 32, and she was dxd with Lupus 8 yrs ago.. but was told it was mild.. and when she did her exam her organs were totally ruined by the steriod and immusuppressant drugs. .. I guess it was the wrong time to see that show.. So I have been hardly been able to keep from crying all the time, I was down to .25mg of xanax in the morning for the longest time.. and now I need 1mg to keep from having contant panic attacks. I really think I am going to die.

I try to talk to Sherif, and he is a help meaning an ear to listen but since he does not have this illness it is hard for him to understand what I am going through..

so that is why I have been so quiet,, and that is not me I always try to answer questions for new people and so concern for everyone, but as I said I constantly feely like I am going to die and feel like I am crawling out of my skin so than I dope myself with the xanax..

I hope all is well with everyone and is having a pain free day.... miss and love you all..

Many Blessings A.

Refinance and lower payments online with Ditech. Visit www.ditech.com Today!

[Guest guest]

, I'm glad Debbie mentioned the Xanax. For one thing, it's not an antidepressant, it's for anxiety. Secondly, it's in the class of drugs known as benzos (benzodiazepams). You have to be very careful with these drugs. One of the problems is that with longterm use, even at accepted dosages, the brain becomes so used to the drug that it doesn't recognize it anymore; you can develop what's called tolerance withdrawal. Even though you are still taking the same dose, you begin to experience withdrawal symptoms. I'm a bit of an expert on this now after going through it with my daughter. Common symptoms are insomnia & muscle cramps. If the doctor doesn't recognize what's happening, they order more drugs or increase the dosage of the drug you are on. That helps for awhile, until the brain again adjusts & the withdrawal symptoms come back. Eventually the patient reaches the maximum dosage & gets in big trouble. The idiot psychiatrist that was treating my daughter had her on 4 sedatives & 4 muscle relaxants; 3 of these drugs were benzos and another (Dalmane) is a close relative. Now I'll admit that until then I had never heard of tolerance withdrawal, but I'd think a psychiatrist would. The detox was horrible. Anyway, be careful that your doctor doesn't increase the Xanax if you really need an anti-depressant, or that you are actually having side effects or something. Here is a link to one site about benzos; I think everyone needs to be knowledgeable about this. This guy is very religious if you go to his personal links, but the medical info is good. Dr. Ashton is probably the top authority on this. There are a number of other good sites; I lost my Favorites list & couldn't think of them off the top of my head.

So, , I hope you get some relief soon. Hugs & warm vibes coming to you from Indiana. Love, Rose

Ramblin' RoseModerator A

To: Neurosarcoidosis From: rozebudz36@...Date: Mon, 15 Jun 2009 05:49:20 -0700Subject: Re: Good day to everyone,,, from

,

Sorry to hear what you are going through. With the depression, it definitely makes things worse. From my experience , (I have experienced bouts of depression ever since I came down with my illness.), it makes things worse .....nothing to look forward to but more bad days. I hope I don't make you feel worse. I just want you to know that I know where you are coming from.

I know you are going through a lot right now with meds, but is the xanax working? Maybe your dr could prescribe something diff. or additional, (which I have) for this bad period right now.

I hope you start to improve and feel better. Will be thinking of you and praying for you. You are an important part of this family and we all care.

Debbie

Subject: Good day to everyone,,, from To: neurosarcoidosis , witcheswand@...Date: Sunday, June 14, 2009, 5:41 PM

greetings..

As Rose has said I have been quiet, and that is true. I am in a depression. let me see were I can start, well as I said before I have been switched from Imuran to Cellcept about 8 wks ago, and as far this med, having lose of my hair, my feet and hands swelled twice there size and my feet turning purple,, it is doing nothing for my head pain,, I have been to the ER 3 times since i've been off the Imuran for dalaudid 2mg injection. the cellcept - It has been much better help with the arm and leg and back and neck pain.. but not completely gone.

My cognitive problems are getting worse,, sherif, has told my Neuro Dr Ross that I keep repeating myself,, to the point that it is 4-5 times I go over things. And I really do not know I am doing it. My short term memory has always been gone. when I was first dxd 2001 the Neuro-pyshic dr did testing and said my short term memory was done for. for the longest time with cognitive theraphy i've learned how to store it in long term memory, well as you know the brain does it.. but she has taught me how to help it along. ... Well I feel like it is not working anymore. for about 5 weeks i've noticed that when I chew my eye's hurt... and I go to the eye dr every six months as you know being on the Plaquneil that is a have too. and back in sept he told me the pressure in my eyes were 23, which is slightly above normal, and I was having trouble focusing on things up close.. he said right away it is time for bi-focals.. talk about feeling old. lol. so I got the glasses, and my stigamistim was slightly worse than before, I can't drive at night at all.

well I went to the eye dr 10 days ago and he said my pressure is 28 in my eyes now , and one eye went farsighted and one nearsighted. and both eyes have different precriptions. . talk about weird eyes now. So to try and give me the best correction I went to contacts again, I had to laugh he gave 2 pair of contacts and each contact had different things to them.. so he said for the next ten days to switch them around and see what is the best correction and best fit due to the stigmatism they hurt my eyes. So I went back after 10 days and he checked the pressure and it is still 28 so he did the field vision test and I failed.. I told him everything kept going black.. so he looked real good at the back of my eyes and said the good thing is your eyes look very healthy.. was a plus,, so he said to go 10 more days without contacts and try to go without my glasses when I can. And when I return on tues, he will recheck the pressure and do another field vision test and diulate my eyes again. When he started to talk about the scaring he sees on my eyes.. and Glochoma(spelling) sorry, this really scared me. With all my organs affected by the NS , except for my kidneys were the only two organs that are still healthy. now my eyes are going to Hell! Than I had my chest cat-scan w/contrast and my hands N feet N pelvis x-rays and I am still waiting to hear how they were.

ontop of that I was watching Dr G. the Medical examiner on tv and a women died suddenly at 32, and she was dxd with Lupus 8 yrs ago.. but was told it was mild.. and when she did her exam her organs were totally ruined by the steriod and immusuppressant drugs. .. I guess it was the wrong time to see that show.. So I have been hardly been able to keep from crying all the time, I was down to .25mg of xanax in the morning for the longest time.. and now I need 1mg to keep from having contant panic attacks. I really think I am going to die.

I try to talk to Sherif, and he is a help meaning an ear to listen but since he does not have this illness it is hard for him to understand what I am going through..

so that is why I have been so quiet,, and that is not me I always try to answer questions for new people and so concern for everyone, but as I said I constantly feely like I am going to die and feel like I am crawling out of my skin so than I dope myself with the xanax..

I hope all is well with everyone and is having a pain free day.... miss and love you all..

Many Blessings A.

Refinance and lower payments online with Ditech. Visit www.ditech.com Today!Windows Live™: Keep your life in sync. Check it out.