My story..

February 17, 2007

Hi all of U in this Group.

I´m new in here, just joined the group a few minuts ago. I´m 26 years

old and live in a town called Randers in Denmark.

Me story is as follows :

I was diagnosed with sarcoidosis in Nov. 2005, and later in March

2006 with Neurosarcoidosis. It all started with a fall on the floor

at home,because I felt indisposed and short of balance. I went to see

my doctor, who measured that I had far to low blood pressure (90/70)

and a rapid pulse (120). He had the suspicion that it could be

auricular fibrillation, so he made me hospitalized. I were in the

hospital for almost a week, and during that week the doctors and

nurses took several blood samples, ECGs and so on from me, but they

didn t find anything abnormal in the test. On the second last day at

my " stay " at the hospital, a doctor made a suggestion to make some

chest radiographs. The X-rays showed that there were something in my

lungs which should not be there and therefore the wanted to make an

electron beam computed tomography of my lungs. It showed the same as

the X-rays. After they have discussed the pictures, they told me that

they would to make a bronchoscopy of my lungs. The bronchoscopy

showed that I had sarcoidosis.

After some time - still with some problems with my balance - my own

doctor recommend that I got a magnet resonance scan. So I got an

appointment at Randers district general hospital for a scan. The scan

showed that I also had sarcoidosis in the cerebellum, and it was it

who caused me the balance problems. I were then submitted to Flemming

Winther Bach, Associate Professor, MD, DMSc at Aarhus University

Hospital.

I were set in a Prednisone treatment starting with 100 Mg/day on the

03/24-2006 for the next 6 weeks - of cause with the usually side-

effect of this medication. So for the first 6 weeks I gained about 35

kg in weight which has resulted in a lot of stretch marks all over my

body ( from approximately 82 kg to 117 kg. ), and I didn´t get a lot

of sleep in that periodand still don´t . Then I were on 75 Mg/day for

2 weeks and so on 50 Mg/day for 11 weeks, 30 Mg/day for 1 week, 25

Mg/day for 2 weeks and then 20 Mg/day for 2 weeks, 12,5 Mg/day for 3

weeks, 10 Mg/day for 1 week and at last 5 Mg/day.

( Sorry for all the numbers ;o))

In week 43 ( 2006 ), after I have had a routine magnet resonance scan

of my brain on the Monday, Flemming phoned me and told me that there

had been a deterioration of the Neurosarcoidosis. So therefore he for

that reason asked me to take 50 Mg/day of Prednisone again plus 100

Mg/day of Imuran.

Under the treatment with Prednisone I have had, as earlier mentioned,

some side-effect ( but who hasn´t ) among other things extreme

changes in mood, slowed healing of cuts and bruises, depression ( I

am on 40 mg/day of Akarin ( Citalopram )),

shortness of breath, especially during the night ( I also on 7,5

mg/day of Imovane - to help me fall a sleep, but it is not for much

use ).

Since week 43 - 2006 I have been for phlebotomies every 2nd week

cause of the use of Imuran. In the meantime Flemming has been

appointed as professor at Aalborg University Hospital, and I have got

another contact Brøgger Christensen who is a head doctor on the

neurological department on Aarhus University Hospital.

3 weeks ago I got the Varicella zoster virus, and for that I am

taking 800 Mg/ 5 times a day of Aciclodan ( I am taking the last pill

to night ), and for the pains I am taking 20 Mg/ 2 times a day of

Oxycontin.

Thursday last week ( 2/8-2007) I attended for control of the

Neurosarcoidosis, on basic for a magnet resonance scanning which was

taken Monday (1/29-2007). It showed that there were no improvement or

a minimum of improvement in the cerebellum.

But nevertheless I am now on 30 Mg/day of Prednisone and still 100

Mg/day of Imuran.

That was a little breifing on my story...

February 17, 2007

Hello and welcome to the family ---

We are sorry you had to find us under these conditions but

the same time, we are happy you did find us. We have nearly

300 members -- some have had sarcoidosis and neurosarcoidosis

for a long time and others are new to the disease, but all have had

to deal with a lot of the same things. Most of us have been down

the prednisone road and gaining weight is just part of it. I gained

60 pounds in two months.......it seems to be the drug of choice

at first and then the Doctors advance to other things. There are

several choices of treatment out there --- Imuran is one of them and

I take it also.......if you have time, check through the posted messages

in the archives as there is a wealth of knowledge in threre as well as

the Files section. You can also always ask questions and there are

many knowledgeable people who will step in and answer your

question or steer you in the right direction to get answers. Please

do keep in mind though that we are all sick and so it may take a day

or two before someone answers.........

Again, welcome to our family and hope you enjoy being part of the

group. We have a great gang here.

Darlene

NS Co-Owner/Moderator

Hi all of U in this Group.I´m new in here, just joined the group a few minuts ago. I´m 26 years old and live in a town called Randers in Denmark.Me story is as follows :I was diagnosed with sarcoidosis in Nov. 2005, and later in March 2006 with Neurosarcoidosis. It all started with a fall on the floor at home,because I felt indisposed and short of balance. I went to see my doctor, who measured that I had far to low blood pressure (90/70)

and a rapid pulse (120). He had the suspicion that it could be auricular fibrillation, so he made me hospitalized. I were in the hospital for almost a week, and during that week the doctors and nurses took several blood samples, ECGs and so on from me, but they didn t find anything abnormal in the test. On the second last day at my " stay " at the hospital, a doctor made a suggestion to make some chest radiographs. The X-rays showed that there were something in my

lungs which should not be there and therefore the wanted to make anelectron beam computed tomography of my lungs. It showed the same as the X-rays. After they have discussed the pictures, they told me that

they would to make a bronchoscopy of my lungs. The bronchoscopy showed that I had sarcoidosis.After some time - still with some problems with my balance - my own doctor recommend that I got a magnet resonance scan. So I got an appointment at Randers district general hospital for a scan. The scan showed that I also had sarcoidosis in the cerebellum, and it was it who caused me the balance problems. I were then submitted to Flemming

Winther Bach, Associate Professor, MD, DMSc at Aarhus University Hospital.I were set in a Prednisone treatment starting with 100 Mg/day on the03/24-2006 for the next 6 weeks - of cause with the usually side-

effect of this medication. So for the first 6 weeks I gained about 35 kg in weight which has resulted in a lot of stretch marks all over my body ( from approximately 82 kg to 117 kg. ), and I didn´t get a lot

of sleep in that periodand still don´t . Then I were on 75 Mg/day for 2 weeks and so on 50 Mg/day for 11 weeks, 30 Mg/day for 1 week, 25 Mg/day for 2 weeks and then 20 Mg/day for 2 weeks, 12,5 Mg/day for 3 weeks, 10 Mg/day for 1 week and at last 5 Mg/day.

( Sorry for all the numbers ;o))In week 43 ( 2006 ), after I have had a routine magnet resonance scan of my brain on the Monday, Flemming phoned me and told me that there had been a deterioration of the Neurosarcoidosis. So therefore he for that reason asked me to take 50 Mg/day of Prednisone again plus 100 Mg/day of Imuran.Under the treatment with Prednisone I have had, as earlier mentioned, some side-effect ( but who hasn´t ) among other things extreme changes in mood, slowed healing of cuts and bruises, depression ( I am on 40 mg/day of Akarin ( Citalopram )),shortness of breath, especially during the night ( I also on 7,5 mg/day of Imovane - to help me fall a sleep, but it is not for much use ).Since week 43 - 2006 I have been for phlebotomies every 2nd week cause of the use of Imuran. In the meantime Flemming has been appointed as professor at Aalborg University Hospital, and I have got

another contact Brøgger Christensen who is a head doctor on theneurological department on Aarhus University Hospital.3 weeks ago I got the Varicella zoster virus, and for that I am taking 800 Mg/ 5 times a day of Aciclodan ( I am taking the last pill to night ), and for the pains I am taking 20 Mg/ 2 times a day of Oxycontin.Thursday last week ( 2/8-2007) I attended for control of theNeurosarcoidosis, on basic for a magnet resonance scanning which was taken Monday (1/29-2007). It showed that there were no improvement or a minimum of improvement in the cerebellum.But nevertheless I am now on 30 Mg/day of Prednisone and still 100 Mg/day of Imuran.

That was a little breifing on my story...

February 17, 2007

Hi, (oops, are you ? sometimes the address name isn't the writer's name.), I'm very glad you found us. As Darlene said, this is a great place to get information & support. It's also a place where you can vent, rage, whine, complain, etc. Do you have good support from family/friends? Are you able to work?

I'm not familiar with the health care situation in Denmark. Do you feel comfortable with your doctors? One thing to consider discussing with your doctor is using some other medications to try getting the Pred dose down. Along with the Imuran, there are many other alternatives. Our Links section (listed at the bottom of every email to the group) has many useful articles & websites. Here are a couple you might want to check out:

http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html http://www.medscape.com/viewarticle/466526?src=search

Welcome to our NS family. I'm very sorry that you have this disease, but I think you will find that this group can help you in many ways.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: My story..Date: Sat, 17 Feb 2007 18:04:11 -0000

Hi all of U in this Group.I´m new in here, just joined the group a few minuts ago. I´m 26 years old and live in a town called Randers in Denmark.Me story is as follows :I was diagnosed with sarcoidosis in Nov. 2005, and later in March 2006 with Neurosarcoidosis. It all started with a fall on the floor at home,because I felt indisposed and short of balance. I went to see my doctor, who measured that I had far to low blood pressure (90/70) and a rapid pulse (120). He had the suspicion that it could be auricular fibrillation, so he made me hospitalized. I were in the hospital for almost a week, and during that week the doctors and nurses took several blood samples, ECGs and so on from me, but they didn t find anything abnormal in the test. On the second last day at my "stay" at the hospital, a doctor made a suggestion to make some chest radiographs. The X-rays showed that there were something in mylungs which should not be there and therefore the wanted to make anelectron beam computed tomography of my lungs. It showed the same as the X-rays. After they have discussed the pictures, they told me that they would to make a bronchoscopy of my lungs. The bronchoscopy showed that I had sarcoidosis.After some time - still with some problems with my balance - my own doctor recommend that I got a magnet resonance scan. So I got an appointment at Randers district general hospital for a scan. The scan showed that I also had sarcoidosis in the cerebellum, and it was it who caused me the balance problems. I were then submitted to Flemming Winther Bach, Associate Professor, MD, DMSc at Aarhus University Hospital.I were set in a Prednisone treatment starting with 100 Mg/day on the03/24-2006 for the next 6 weeks - of cause with the usually side-effect of this medication. So for the first 6 weeks I gained about 35 kg in weight which has resulted in a lot of stretch marks all over my body ( from approximately 82 kg to 117 kg. ), and I didn´t get a lot of sleep in that periodand still don´t . Then I were on 75 Mg/day for 2 weeks and so on 50 Mg/day for 11 weeks, 30 Mg/day for 1 week, 25 Mg/day for 2 weeks and then 20 Mg/day for 2 weeks, 12,5 Mg/day for 3 weeks, 10 Mg/day for 1 week and at last 5 Mg/day.( Sorry for all the numbers ;o))In week 43 ( 2006 ), after I have had a routine magnet resonance scan of my brain on the Monday, Flemming phoned me and told me that there had been a deterioration of the Neurosarcoidosis. So therefore he for that reason asked me to take 50 Mg/day of Prednisone again plus 100 Mg/day of Imuran.Under the treatment with Prednisone I have had, as earlier mentioned, some side-effect ( but who hasn´t ) among other things extreme changes in mood, slowed healing of cuts and bruises, depression ( I am on 40 mg/day of Akarin ( Citalopram )),shortness of breath, especially during the night ( I also on 7,5 mg/day of Imovane - to help me fall a sleep, but it is not for much use ).Since week 43 - 2006 I have been for phlebotomies every 2nd week cause of the use of Imuran. In the meantime Flemming has been appointed as professor at Aalborg University Hospital, and I have gotanother contact Brøgger Christensen who is a head doctor on theneurological department on Aarhus University Hospital.3 weeks ago I got the Varicella zoster virus, and for that I am taking 800 Mg/ 5 times a day of Aciclodan ( I am taking the last pill to night ), and for the pains I am taking 20 Mg/ 2 times a day of Oxycontin.Thursday last week ( 2/8-2007) I attended for control of theNeurosarcoidosis, on basic for a magnet resonance scanning which was taken Monday (1/29-2007). It showed that there were no improvement or a minimum of improvement in the cerebellum.But nevertheless I am now on 30 Mg/day of Prednisone and still 100 Mg/day of Imuran.That was a little breifing on my story...

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February 17, 2007

Welcome

to this wonderful group (family), most of us have been down the same road as

you described, I myself have been there except for the Imuran, I am on

Metotrexate, and was able to get off the pred. I also take plaquanil, and just

started Lyceria, for nerve pain. I was dx. In 1995 with a lymph bx. And was

fine, then a year or so later had lung problems, treated with pred. got better,

into remission, and good about two years, then flared again, lung, skin,

systemic, and then neuro.

That’s

a brief on me, I have had to change my lifestyle many times, but adapt and move

on. One thing I tell my self these days, is that my “normal” is

different every day.

You have

found a wonderful, informational family of fellow sarcoidians, each and

everyone is special in there own way, and many are full of great information

for you. I’m sure you will find this a helpful group (family).

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of michaelhuus

Sent: Saturday, February 17, 2007 11:04

AM

To: Neurosarcoidosis

Subject: My

story..