HCV-Related Nervous System Disorders

This topic has 44 replies, 19 voices, and was last updated 8 years, 10 months ago by sonix.

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23 December 2015 at 9:10 am #7144
sabrecat
- Topics: 2
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- Guardian Angel
@sabrecat
Hi Wayne,

“have not felt this good in years actually I think I had forgot what it was like to feel good”

This observation rings a bell with me too.

Glad to hear things are on the up and up for you.

Yours

J.
23 December 2015 at 12:20 pm #7147
Enkel
- Topics: 16
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- Guardian Angel
@enkel
Wiki:
Muhamad Aly Rifai, M.D. (Arabic الدكتور محمد علي الرفاعي) is a distinguished Arab American Internist and Psychiatrist and a renowned clinician researcher who is known for describing the association between psychiatric disorders and Hepatitis C.[1] He co-authored the first clinical report [2][3] detailing the association between Hepatitis C Infection and Psychiatric Disorders.[4][5][6] He was awarded the American Psychiatric Association / American Psychiatric Institute for Research and Education Scholarship for research on severe mental illness [7] and Hepatitis C. Rifai is a fellow of the American College of Physicians, the American Psychiatric Association and the Academy of Psychosomatic Medicine. He is the recipient of the Academy of Psychosomatic Medicine prestigious William Webb Fellowship. He is also the recipient of several clinical excellence awards from the National Institute of Mental Health and the American College of Physician Executives. He is a clinical professor of Medicine and Psychiatry at The Commonwealth Medical College.

Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured
23 December 2015 at 1:19 pm #7148
Nonna
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- Novice
@nonna
Its 24 week since I finished my last treatment and i am still clear. I didn’t use generics because due to severe liver damage I was able to have compassionate access. I feel fantastic but unfortunately not everything I had thought was due to HCV has disappeared. I still have severe joint and muscle pain. My memory is still shot and my lack of cognition dives me insane.

I can walk a lot further than i could before treatment, still not far but further. I am starting to build some muscle for the first time in such a long time. I don’t need a nana nap and I have gone bad to work part time. I didn’t think any of those things would ever happen.

I stilltest positive for cryoglobulins in the blood and I am always cold, well not always, it is bloody hot here but my feet are often cold. I do have a few mood swings still and would prefer to be up all night and sleep all day but my sleep pattern has started to improve.

Things do improve after treatment, but don’t expect miracles.
23 December 2015 at 2:01 pm #7149
berrinice
- Topics: 10
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- Guardian Angel
@berrinice
That’s great to hear you are doing well after 24 weeks – working part-time is quite an achievement considering Hep C’s lingering complications. Cryoglobulin proteins are a bastard. Lyn from Tassie had that problem with mainly joint pains.
About Gilead medicating patients after the billion is spent, it wouldn’t surprise me if Turnbull had a hand in the final process. I feel only someone like him could dream up such a challenge. kindly
24 December 2015 at 6:06 am #7190
Chejai
- Topics: 5
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- Guardian Angel
@chejai
That’s great news Wayne! I too take Nexium, anti-depressants, valium and nerve meds. Wow, the idea of not needing the full medicine cabinet anymore is beyond my grasp ide:' />

Good Luck for the rest of your Tx

QLD Australia ‚òÄÔ∏è
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50H
24 December 2015 at 6:33 am #7195
Wayne
- Topics: 2
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- Treatment Warrior
@wayne
Up until about 3months ago didn’t know HCV could be causing a lot of the problems I was having found out from this website also nursed my Father with late stage cancer he wasn’t eating or going to toilet etc toxins were building up in his body causing confusion and anxiety.

Genotype 1b 42 years.
2007 48 Weeks Interferon + Ribavirin Relapsed.
2015 6 Weeks same as above + Sempivir Too many sides stopped.
7/11/15 started Sof / Dac + Riba 24 Weeks. Kingswood Pharmacy.
VL Before tx 3 million.
1st bloods 8 weeks undetected
.
24 December 2015 at 12:17 pm #7220
sonix
- Topics: 7
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- Guardian Angel
@sonix
I think my anxiety level dropped a couple of points after reading this post on Quora yesterday –

Cockroach Theory
A beautiful speech by an unknown, may be Sundar Pichai, MAY BE:
The cockroach theory for self development
At a restaurant, a cockroach suddenly flew from somewhere and sat on a lady.
She started screaming out of fear.
With a panic stricken face and trembling voice, she started jumping, with both her hands desperately trying to get rid of the cockroach.
Her reaction was contagious, as everyone in her group also got panicky.
The lady finally managed to push the cockroach away but …it landed on another lady in the group.
Now, it was the turn of the other lady in the group to continue
the drama.
The waiter rushed forward to their rescue.
In the relay of throwing, the cockroach next fell upon the waiter.
The waiter stood firm, composed himself and observed the behavior of the cockroach on his shirt.
When he was confident enough, he grabbed it with his fingers and threw it out of the restaurant.
Sipping my coffee and watching the amusement, the antenna of my mind picked up a few thoughts and started wondering, was the cockroach responsible for their histrionic behavior?
If so, then why was the waiter not disturbed?
He handled it near to perfection, without any chaos.
It is not the cockroach, but the inability of those people to handle the disturbance caused by the cockroach, that disturbed the ladies.
I realized that, it is not the shouting of my father or my boss or my wife that disturbs me, but it’s my inability to handle the disturbances caused by their shouting that disturbs me.
It’s not the traffic jams on the road that disturbs me, but my inability to handle the disturbance caused by the traffic jam that disturbs me.
More than the problem, it’s my reaction to the problem that creates chaos in my life.
Lessons learnt from the story:
I understood, I should not react in life.
I should always respond.
The women reacted, whereas the waiter responded.
Reactions are always instinctive whereas responses are always well thought of.
A beautiful way to understand…………LIFE.
Person who is HAPPY is not because Everything is RIGHT in his Life..
He is HAPPY because his Attitude towards Everything in his Life is Right..!!

M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia
24 December 2015 at 1:06 pm #7223
CJ
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- Guardian Angel
@cj
what a wonderful post sonix
….I’ll try to remember that when next a creepy cockroach scuttles anywhere near me ….!

I’ve been hep free for going on 3 years now, and I definitely felt more & more energy after killing the virus.

For the past 2 years I’ve been able to go to a gym most days, probably 5, 6 days a week.
When I had the hep, I was so exhausted , if I went to the gym , I’d have to rest for hours afterwards.

I wonder if the virus affected the amount of miscarriages I had, in the end they found it was an immune thing & just taking asprin each day ( and acupuncture) helped me to stay pregnant & have my boy!!
I suspect it was virus related.

My skin doesn’t get as itchy as it used to & aches & pains are much less.

However my memory’s not good, but I think the Ifn did that more than the virus.

Life is better now & will also be, for all you guys conquering the virus
x

J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results….pending….
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
25 December 2015 at 2:31 pm #7276
Joy
- Topics: 12
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- Guardian Angel
@joy
Concering nervous system disorders – latest news is that those with Hep C have 30% more chance of developing Parkinsons.

http://www.medicalnewstoday.com/articles/304405.php

I am going to treat this news like it’s a cockroach and I’m the waiter.
9 January 2016 at 9:24 pm #8471
Alsdad
- Topics: 18
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- Guardian Angel
@alsdad
It seems that ‘vibrating phone syndrome’ isn’t exclusive to us heppers:

http://www.bbc.co.uk/programmes/p03f01m4

Which is kind-of good news for me because I’ve been getting the odd twinge in the last couple of weeks, in the countdown to my SVR test .
9 January 2016 at 9:41 pm #8472
Enkel
- Topics: 16
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- Guardian Angel
@enkel
the hep C brain is significantly different than the non Hep C brain, especially in the pre-frontal area. And it doesnt go for one two months. The vibrating symptom is not psychological but mostly related to sitting too long, i think.

Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured
9 January 2016 at 9:48 pm #8473
Alsdad
- Topics: 18
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- Guardian Angel
@alsdad
Not with me it wasn’t. The point that it really started to bug me was when it happened shortly after we sat down in a Frankie and Bennys to treat the kids to a pizza, not long after I’d put my phone on the dining table.
10 January 2016 at 1:44 am #8494
LondonGirl
- Topics: 16
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- Guardian Angel
@londongirl
I nearly always get vibrating phone syndrome when outvand about and walking – So odd !

GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
11 January 2016 at 8:22 am #8629
zhuk
- Topics: 5
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- Guardian Angel
@zhuk
Me too, LG – seems to be walking-related definately. Strange indeed!

GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 – 6 weeks UNDETECTED
AST 26
ALT 26
19 January 2016 at 5:31 am #9741
sonix
- Topics: 7
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- Guardian Angel
@sonix
Article today mentions 89% of university undergraduates had experienced phantom vibration syndrome.

http://www.news.com.au/technology/gadgets/how-your-smartphone-is-making-you-hallucinate/news-story/7d844252555abcc9825b4e48695f9973

M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia
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