New member trying to gain perspective and knowledge

[Guest guest]

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,