TOPIC:

For a year I have had pain in the upper right side of my mouth and face from the trigeminal nerve. It was never severe and it is improving but it is nasty. Feels like toothache sometimes, jaw ache other times, cheek ache other times. It kicked off after a load of dental work. My best guess is that it is connected to my right shoulder muscles which are pinching a nerve somewhere on the way up to my face. I also get random stabbing pains now and again anywhere in my body. I am hoping that when I get rid of the hepc virus this nasty nerve stuff will disappear along with a knee pain which developed this year on the site of an old knee injury. Also my chronic fatigue.

I'd like to think that all my aches and pains will disappear once I am SVR but there's no way to know until I get there. Meanwhile each new malady is queuing up and needing action which I am putting off. I really need to get this virus out of my body and get to work on any other damage that is left.

dointime

Wow ! new to the buyers club and it with much interest I read the posts on HepC symptoms.
I have had the disease for some 30 years I suppose?
I have known about it for a long time. Under went interferon treatment in 2002 with little success. Brought my ALT to normal for about 3 months. I currently have cirrhosis with a fibroscan reading of 16 so F4 condition.
All of that aside the neurological symptoms being described in this thread I have had for years. I have had at least 2 brain MRIs - suspecting brain cancer and have had numerous other tests in an attempt to identify a cause of the dizziness, buzzing sensation, anxiety / panic attacks and general out of body detached feeling I have experienced. I first noticed these symptoms in 2004. Needless to say no particular cause was ever identified. I suppose now I have kind of just learn to live with it.

Maybe this explains it ????

I also have dizziness, buzzing sensation, anxiety and general out of body detached feeling, earthquake-like sensation, and more. No one told me that hepc can cause them. That is why i posted this thread. I hope these are from hepc as the cure is out there. www.hindawi.com/journals/jir/2012/236148/

Hi Chrisp

"Needless to say no particular cause was ever identified."

You went through the mill with 2 brain MRI's.
A lot of this type of thing seems to require multiple testing for probable cause and then nothing found (for which we should be thankful).
Still, it is a lot to go through to come out of it none the wiser and yet know that there is something not right.

When I got the facial pain, the dentist was all too eager to ship me off to the hospital where I knew what I would get. I suppose that is better than having a serious illness which is missed, but I decided not to go. I just had the feeling that it might be the hepC and not a brain tumour or MS or any of the other things they have to test for. Maybe I was irresponsible not to get it checked out, I guess time will tell. I just didn't want to get on that treadmill and end up with a lot of unnecessary procedures. Either way, there's no good choice.

dointime

Hi everyone,

New member to the board, hoping I can learn more about the possibilities of treatment as they arise. Have been HCV positive since 1988 with Gen 1a and treatment naive, largely due to a significant history of depression & other mental illness aspects, which my Dr sees as pretty much contraindicating 12 months of the pegintf/rib combo.

I'm also fortunate enough to have a F0 fibrosis score (2.9 fibroscan) and a VL only in the couple of hundred 1000s - not the most urgent candidate for treatment anyway, I know.

However I do suffer from the sudden crushing exhaustion, dizziness, buzzing sensations, brain fog and general out of body detached feelings others have described here. Plus I have a significant chronic neurological pain condition of 14 years standing which flares up to the point that functioning can be difficult somtimes...and I think that there may be symptoms I've attributed to that which might really be due to Hep C (joint and muscle pain particularly)

My doc (specialist at a major Sydney hospital) put me off the whole idea of accessing overseas meds at an appointment today, saying that the Govt will very likely allow the new DDA's in from early next year - I have absolutely nil confidence that this will happen. In the meantime, I know that while not badly affected it is the back of my mind that the longer you have this disease (coming up on 30 years) the possibility that things could go south at any time. I am also mindful of the Govt/TGA finding some way of legally thwarting operations like the Buyer's Club so none of us will have any recourse at all...I can't see any of the treatments being passed by Federal Cabinet with a collective $3bn price tag.

Apologies for the length of my post; having only found out the OS supply of meds recently its something in the back of my mind regularly now.

Your specialist is being economical with the truth, to say the least. And we hear this story time and time again. When the new DAA meds do become available through your healthcare provider, you (with your current finroscan score) will be at the very back of the queue. Unless the price of the meds drops to a fraction of it's current price, or you become very ill, you will wait years for a premium treatment.

My advice: Get involved here and get yourself treated now.

Hi Zhuk,

I am possibly 26 years carrier of hepc since being 6 years old doing two operation in hospital. I am F1 but have a lot of the strange symptoms.

Are your symptoms migratory? Do they go from one place to the other?
In some articles the hepc is related to psychosomatic illness.

Yes the same old conservative stance from your good doctor. Wait...wait...wait...

I agree with Alsdad, jump in and fix yourself NOW.

It's LIBERATING.

Alsdad, thank you very much for your reply. In fact that is precisely what I remarked to her - that even if the meds were approved surely due to cost it would be triaged and, as you logically point out, I'd have to be way back in the list. She then said, 'Oh no, it would be available to everyone' - which kinda negated my mention of the $3 billion cost which isn't going to happen lol

So yes...might be time to at least think about treatment. I have only come across this site very recently,. so its all a bit of a learning curve!

Thank you again for your response, I can see there will be a lot to take in

Enkel wrote: Hi Zhuk,

I am possibly 26 years carrier of hepc since being 6 years old doing two operation in hospital. I am F1 but have a lot of the strange symptoms.

Are your symptoms migratory? Do they go from one place to the other?
In some articles the hepc is related to psychosomatic illness.

Hi Enkel

Thanks for your post and your PM links too

Yep as I mentioned I have 'travelling' pain and strange sensations, buzzing etc quite often at night which keeps me from sleeping sometimes. And its hard to tease out what could be the chronic pain and what could be the Hep C. I do get that "itching" sensation in the liver quadrant, is that also a thing with some people? Sometimes some 'stinging' as well, however a GP told me that wasn't likely to be my liiver...which I found hard to believe as it is spot-on in the right area lol

Joy wrote: Yes the same old conservative stance from your good doctor. Wait...wait...wait...

I agree with Alsdad, jump in and fix yourself NOW.

It's LIBERATING.

Thank you so much for your reply also Joy.

Funny you should say that, heh...the doc has been saying just that since the end of 2013....first of all that new meds are coming, probably the beginning of 2014...then wait for the TGA approval...then wait for the PBS recommendation...now wait it will be passed by Cabinet and likely be the beginning of *next* year...for all patients, what's more


When all possible logic suggests otherwise Lol


I am going to have to think seriously about it yes, I agree with you. Lots to think about, and consider.


Thank you everybody for such warm welcomes to the forum on my first outing...its really appreciated

Hi Zhuk and welcome from me too.
I agree with the above, get treated asap and most of your symptoms will dissapear straight away.
I sleep like a baby from the day one of my treatment. The dizziness and vibrating sensations have gone now. The tinnitus is still there but not so obvious and I don't notice it as much.
The skin looks smoother and clearer, I don't sweat anymore doing simple physical activity. And so on.
I wish I could have done the treatment one year ago when I first found out. I literally lost a whole year of my life being extremely depressed and withdrawn from the family and friends.

A whole year lost!
How about decades.
Hepc steals lives, and not just by killing people.
dt

What I'm trying to say is that it may take another year for Zhuk to get treated on national health. Does he want to loose that year of his life or just get meds from the buyers club and get on with his life?

That's a great way to put it Nadia. Would certainly persuade me. Even one more day lost is one day too many.
dt