Re: New member trying to gain perspective and knowledge

[Guest guest]

Tracie, Well said. Faith your right is a big part of our disease, whatever Faith means to each person is different, but still it's what gets many of us through this journey. I know it is Faith that I rely on daily.

May each and everyone be blessed this year. and may I say, Merry Christmas to all. Marla

Hi, I just joined this group a few days ago. Before this, I hadn't

even met anybody who had heard of neurosarcoidosis.

After reading some of your messages, I am considering myself

somewhat lucky in terms of the effects I have suffered from this

disease, despite the fact that I have been struggling tremendously.

In February of this year, I started to feel very sleepy. This

increased to the point that I was falling asleep mid-sentence while

standing up, by May; then I would wake up in a few seconds and start

talking gibberish, because I dreamed that our conversation was about

a different topic. My friends and husband tell me that by that time

I seemed like a completely different person, because I couldn't

respond to questions or topics like I normally would they said it

was as if I just weren't there. It turned out that this was due to

my neurosarcoidosis settling in my hypothalamus, which also affected

my pituitary. My vision was affected, and I had to start wearing

glasses. I had started gaining weight months before the sleepiness

began. I also experienced strange hot/cold sensations--for

instance, having to allow my food to cool to room temperature before

eating it, and not being able to take spicy foods (while before, I

was a total spicy food fanatic).

In early July, I was diagnosed with neurosarcoidosis, following

MRI's and a spinal tap. My doctors started me on a high dose of

prednisone, but I experienced awful side-effects. I had such severe

diarrhea that it caused my anus to bleed, so badly that it made me

anemic; partly due to that, and maybe partly due to other side-

effects, I was bed-ridden for nearly two months. Within a few

months I gained 80 pounds, despite the fact that I had such bad

diarrhea that I couldn't have been holding on to a lot of calories.

I retained enough water that it made my feet hurt to stand on them,

and my fingers and other parts of my body became very swollen. My

lungs are now partially deflated due to the prednisone use and

weight-gain. I have bad asthma, have to use a CPAP machine for

sleep apnea, and get out of breath walking (my doctors have examined

my lungs many times to make sure there is no sarcoidosis in them).

As far as walking goes, I have great difficulty doing this beside my

breathing problems, partly due to swollen feet, back problems due to

the weight gain, and problems with both my legs and back due to

muscle atrophy while I was bed-ridden. I can go short distances

with a cane.

But luckily for me, when my neurologist examined my most recent MRI

a few weeks ago, he said that the inflammation in my brain was

gone. My sleepiness and (nmost of) my intolerance to heat/cold

have gone, but I retain all of my other problems, mostly from the

prednisone. Can anybody out there give me any idea how long it

might take for the effects of the prednisone to wear off? I know it

must be different for everybody, but maybe some of you have stories

that might give me an idea, or at least put things into perspective

for me. I have heard very little, really, about anyone else's

experience with sarcoidosis. I am afraid I haven't quite figured

out how to use the archives to find much out.

Also, I have just been diagnosed with breast cancer. Tonight I will

speak to my oncologist for the first time and find out what my stage

is, and possible courses of action. So I am sorry if I don't reply

in a timely manner to anybody! Thank you so much, and I hope you

are having a good holiday season. This season is proving to be very

painful for me, but I hope it is better for others in many ways. I

do know that I should be grateful that the effects of my

neurosarcoidosis are not even as bad for me as they have been for

others. Wishing you all well,

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

[Guest guest]

Welcome to the group . Amazing that a benign disease like sarcoidosis can wreak such havoc on the simple daily life process.

For you to be going through breast cancer at the same time is a tough combination. One thing that may be a blessing in disguise here-- the same cancer treatment they use for breast cancer has proven to be a catalyst for healing and stopping sarcoidosis-- so let's envision this working that way for you!

That alone makes me think that the idea of reclassifying sarcoidosis into a "neoplasia disease" that would open up more money into the study of sarc as a cancer--- might just be a great idea.

You asked about the challenge of getting of the prednisone and recovering from the side effects-- Pred must be weaned down, and that can take quite a long period of time. Many of us have had to go up and down in dosage over a period of a couple of years, and then if the sarc comes back-- it's either back on the pred or some other "steroid sparing immunosupressant."

This will be an issue you will want to coordinate with the oncologist and your rheumatologist and neurologist-- so that the NS doesn't become overlooked while you undergo whatever treatment will be necessary for the breast cancer.

Whatever questions we can help with, ask away, if we don't know the answers, we'll help you find them. Make sure you get a copy of the brochures on sarcoidosis from FSR --www.stopsarcoidosis.org-- neuro, cardiac and systemic and share them with the oncologist. The first copy of each is free-- and it's worth paying the small change amount for extra copies.

We also have a wealth of articles that explain sarc-- and I do hope that the oncologist will help you with both issues.

Know that you've found a big family- to help you learn about what is happenig to you.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Tuesday, December 9, 2008 10:12:04 AMSubject: New member trying to gain perspective and knowledge

Hi, I just joined this group a few days ago. Before this, I hadn't even met anybody who had heard of neurosarcoidosis. After reading some of your messages, I am considering myself somewhat lucky in terms of the effects I have suffered from this disease, despite the fact that I have been struggling tremendously. In February of this year, I started to feel very sleepy. This increased to the point that I was falling asleep mid-sentence while standing up, by May; then I would wake up in a few seconds and start talking gibberish, because I dreamed that our conversation was about a different topic. My friends and husband tell me that by that time I seemed like a completely different person, because I couldn't respond to questions or topics like I normally would they said it was as if I just weren't there. It turned out that this was due to my neurosarcoidosis settling in my hypothalamus, which also

affected my pituitary. My vision was affected, and I had to start wearing glasses. I had started gaining weight months before the sleepiness began. I also experienced strange hot/cold sensations-- for instance, having to allow my food to cool to room temperature before eating it, and not being able to take spicy foods (while before, I was a total spicy food fanatic). In early July, I was diagnosed with neurosarcoidosis, following MRI's and a spinal tap. My doctors started me on a high dose of prednisone, but I experienced awful side-effects. I had such severe diarrhea that it caused my anus to bleed, so badly that it made me anemic; partly due to that, and maybe partly due to other side-effects, I was bed-ridden for nearly two months. Within a few months I gained 80 pounds, despite the fact that I had such bad diarrhea that I couldn't have been holding on to a lot of calories. I retained

enough water that it made my feet hurt to stand on them, and my fingers and other parts of my body became very swollen. My lungs are now partially deflated due to the prednisone use and weight-gain. I have bad asthma, have to use a CPAP machine for sleep apnea, and get out of breath walking (my doctors have examined my lungs many times to make sure there is no sarcoidosis in them). As far as walking goes, I have great difficulty doing this beside my breathing problems, partly due to swollen feet, back problems due to the weight gain, and problems with both my legs and back due to muscle atrophy while I was bed-ridden. I can go short distances with a cane.But luckily for me, when my neurologist examined my most recent MRI a few weeks ago, he said that the inflammation in my brain was gone. My sleepiness and (nmost of) my intolerance to heat/cold have gone, but I retain all of my other problems,

mostly from the prednisone. Can anybody out there give me any idea how long it might take for the effects of the prednisone to wear off? I know it must be different for everybody, but maybe some of you have stories that might give me an idea, or at least put things into perspective for me. I have heard very little, really, about anyone else's experience with sarcoidosis. I am afraid I haven't quite figured out how to use the archives to find much out. Also, I have just been diagnosed with breast cancer. Tonight I will speak to my oncologist for the first time and find out what my stage is, and possible courses of action. So I am sorry if I don't reply in a timely manner to anybody! Thank you so much, and I hope you are having a good holiday season. This season is proving to be very painful for me, but I hope it is better for others in many ways. I do know that I should be grateful that the

effects of my neurosarcoidosis are not even as bad for me as they have been for others. Wishing you all well,

[Guest guest]

Welcome

We are sorry you had to meet us this way but glad you found us. The moderators here are great so talk to them.

I am a kinda of sit in the back and learn from others and I have learned a lot from the posts i've read here.

God Bless and keep you.

Jackie

New member trying to gain perspective and knowledge

Hi, I just joined this group a few days ago. Before this, I hadn't even met anybody who had heard of neurosarcoidosis. After reading some of your messages, I am considering myself somewhat lucky in terms of the effects I have suffered from this disease, despite the fact that I have been struggling tremendously. In February of this year, I started to feel very sleepy. This increased to the point that I was falling asleep mid-sentence while standing up, by May; then I would wake up in a few seconds and start talking gibberish, because I dreamed that our conversation was about a different topic. My friends and husband tell me that by that time I seemed like a completely different person, because I couldn't respond to questions or topics like I normally would they said it was as if I just weren't there. It turned out that this was due to my neurosarcoidosis settling in my hypothalamus, which also affected my pituitary. My vision was affected, and I had to start wearing glasses. I had started gaining weight months before the sleepiness began. I also experienced strange hot/cold sensations-- for instance, having to allow my food to cool to room temperature before eating it, and not being able to take spicy foods (while before, I was a total spicy food fanatic). In early July, I was diagnosed with neurosarcoidosis, following MRI's and a spinal tap. My doctors started me on a high dose of prednisone, but I experienced awful side-effects. I had such severe diarrhea that it caused my anus to bleed, so badly that it made me anemic; partly due to that, and maybe partly due to other side-effects, I was bed-ridden for nearly two months. Within a few months I gained 80 pounds, despite the fact that I had such bad diarrhea that I couldn't have been holding on to a lot of calories. I retained enough water that it made my feet hurt to stand on them, and my fingers and other parts of my body became very swollen. My lungs are now partially deflated due to the prednisone use and weight-gain. I have bad asthma, have to use a CPAP machine for sleep apnea, and get out of breath walking (my doctors have examined my lungs many times to make sure there is no sarcoidosis in them). As far as walking goes, I have great difficulty doing this beside my breathing problems, partly due to swollen feet, back problems due to the weight gain, and problems with both my legs and back due to muscle atrophy while I was bed-ridden. I can go short distances with a cane.But luckily for me, when my neurologist examined my most recent MRI a few weeks ago, he said that the inflammation in my brain was gone. My sleepiness and (nmost of) my intolerance to heat/cold have gone, but I retain all of my other problems, mostly from the prednisone. Can anybody out there give me any idea how long it might take for the effects of the prednisone to wear off? I know it must be different for everybody, but maybe some of you have stories that might give me an idea, or at least put things into perspective for me. I have heard very little, really, about anyone else's experience with sarcoidosis. I am afraid I haven't quite figured out how to use the archives to find much out. Also, I have just been diagnosed with breast cancer. Tonight I will speak to my oncologist for the first time and find out what my stage is, and possible courses of action. So I am sorry if I don't reply in a timely manner to anybody! Thank you so much, and I hope you are having a good holiday season. This season is proving to be very painful for me, but I hope it is better for others in many ways. I do know that I should be grateful that the effects of my neurosarcoidosis are not even as bad for me as they have been for others. Wishing you all well,