Continuation of thread below - 'Just Received Lab Results...'

[LindyK]

The thread got pretty long so I continued it because I just want to thank all of you who responded.  There was a lot of information that will help me when I go back to see the doctor.

You all are great!!  It is my hope that I will be able to help others as you all have helped me as I continue on this journey.  I guess that is what it's all about though.

This board has become a lifeline for me.  I, like everyone else here I guess, didn't have a clue about this disease until I found this forum.

I can't thank you enough!

[zzzztime]

do you mind if i ask what kind of sleep disturbances you have?have narcolepsy that has got much worse lately and I wonder if any one else w/hepc has it.
Ihave been reading your posts and its wierd, like reading my own history. Im 46y/o female, had hepc since 1980. Never had too many sx. except bouts of the "flu" 1-2 x/yr. the bouts started getting worse in sx, length & frequency. 2 yrs ago seems like entire body went to h***. was worked up by endocrinologist, 2 neurologist, cardiologist,pulmonologist, hematologist,3 gastros, & psych. I did end up with a few diagnosis but its mostly because the hepc has become symptomatic. that can be very frustrating cause there are still so many docs that don't think you get sx.s from hep c. I too have lost 50# since May. My job has been very understanding, so far ive dropped down to about 20 hours/wk. I am nervous about how long they will  be understanding, I haven't even started tx yet.Good luck w/your test results & your docs. glad you found the site!

[hippygem]

Hi there, just reading your comment on narcolepsy, I have a friend who has hep c that is getting tested for that, he is having major sleeping issues, whereas he might have to stop driving his car because he may fall asleep at the wheel.
I will let you know the outcome for him after he sees the doctors. Did you have to have a sleep apnea type of test done to have this diagnosed? What processes did you have to go through?

Would appreciate any information you may have on this.

Linda


Lindy::This forum is fantastic isnt it, I too have found a lot of information and comfort coming here.  Hope all goes well for you.

[zzzztime]

driving has been a big problem for me also, thats why i had to go on treatment. I was dx w/narcolpsy many years ago and it was contolled very well with provigil. However in the last yr.or so it has gotten out of control(just like every other physical problem). I started having EDS, excessive daytime sleepiness, didn't know there was such a thing. I was sleeping 14 - 18 hours /day.
I had 2 sleep studies. One is an overnite test where they monitor you all night. The other one you stay at the hospital all day and take naps every hour while they monitor you. mine both were positive.

[zzzztime]

continuing - there are different causes for narcolepsy. I believe the more common is due to sleep apnea. you don't get enough rem sleep because of breathing problems. they can try to tx that with cpap(beathing machine) you wear at night.You usually see a pulmonary md for that. My problem is a neurological problem, My brain is not letting me sleep right. Either way its very difficult to live with. I wish your friend good luck with his tests!