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TOPIC: HCV-Related Nervous System Disorders

HCV-Related Nervous System Disorders 4 years 2 months ago #5144

  • zhuk
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Thanks Joy, really appreciate your well wishes. Great to hear how much better your pain is after tx; as you say we get habituated to thinking this is life as "normal" - when in fact none of us knew what normal was at all heh.

Similarly, how much of our emotional/mental issues are hep-related and how much is endogenous...this is also going to be an interesting one to find out. I had a lot of depression-issues in my young life before contracting hep, but I can only think they would have been exacerbated afterwards.
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
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HCV-Related Nervous System Disorders 4 years 2 months ago #5145

  • Jimmy6429
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Yeah Zhuk I found my emotional state was mostly due to food intolerance before hepc, Then I got hepc and it all went crazy, and I did too, its weird to get your mind back after so many years of suffering, I still watch my diet closely and find it mostly relieves the original issues, now on TX its like being supercharged compared to how I was, I think my emotional issues were somewhat the result of my wrong diet and somewhat the result of issues during childhood, mix that with hepc ...

Now I am actually contacting family I haven't for 30 years or so,, its like we have a future again, thanks Doc :)
jim
3 years cured, Sof/Dac, thanks Doc Freeman, hepc only a distant memory, go for it ppl
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HCV-Related Nervous System Disorders 4 years 2 months ago #5171

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I have a question, does the sof/led or sof/dac treatment affects the nervous system too?

If yes, the gurney is difficult during the treatment as in beginning there are two contributes HCV and The meds
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
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HCV-Related Nervous System Disorders 4 years 2 months ago #5176

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Damn that is great abut getting back in touch with family jimmy, all the best with it.
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
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HCV-Related Nervous System Disorders 4 years 2 months ago #5291

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Very interesting this extrahepatic involvement in hepatitis C.
In the last 10 years before being diagnosed with hepatitis C, I had strange pains.
I investigated, but no explanation. So I got to get used to them.
These periodic pain, comes and goes, in the diaphragm / stomach, as if you have something you can not swallow. Ultrasound / Endoscopy = result = unknown cause! Periodical pain, comes and goes, back at the base ribs. The pain woke me up, because that always happens at around 2 to 3 am. Rheumatologist / x-ray= result = unknown cause!
In both cases only help was heating pad. And patience ... it usually does not last longer than 1 hour.
I hope the pain does not come back if I will cure hep C!
:woohoo:
HCV since I don't know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful :)
virus not detected 06.02.2016 & SVR24
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HCV-Related Nervous System Disorders 4 years 2 months ago #5299

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Enkel wrote:
I have a question, does the sof/led or sof/dac treatment affects the nervous system too?

If yes, the gurney is difficult during the treatment as in beginning there are two contributes HCV and The meds

From a lay persons perspective and personal experience it appears that the DAA's don't really have many side effects. What happens is there is billions of viral cells being killed off early in the TX process and I believe this is the cause of most of our side effects. Our bodies will also need time to adjust to the new environment it operates in. Don't take this as Gospel but it's the way I understand that it works for me !

cheers
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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HCV-Related Nervous System Disorders 4 years 2 months ago #5786

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I'm really feeling optimistic after reading this. All these conditions that have hit me in the past couple of years - like being described here, especially the peripheral neuropathy, joint pain, night pain is the worst and causes insomnia, a lot of things investigated but told 'it must be age'!!

A couple of years ago I was building bird aviaries, cages, gardening and maintaining a massive property - all on my own. Then went downhill rapidly and had to move to smaller place, lower maintenance, God I'm crippled in pain after mowing the lawn, barely 1/4 the size of previous. No chance building stuff anymore.

The idea I may be free of some of this is awesome! Like you Zhuk I know I can't do anything about spinal nerve impingement & arthritis but would love not to have burning hands and feet 24/7 :pinch:
QLD Australia ☀️
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 #woohoo!
AST 24
ALT 26
GGT 50H
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HCV-Related Nervous System Disorders 4 years 2 months ago #5790

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Yeah, I hear you on that Chejai - I'm optimistic after reading here too :)

Had all the investigations, ultrasounds etc which inevitably turn up nothing - but it must be just "getting old"? And like you, the symptoms seem to have ramped up in the past couple of years. Damn I'm still in my 40s and was pretty sure it wasn't 'normal' to feel like this lol

This kind of long-standing viral infection has to have wide-ranging systemic effects, our bodies are under bombardment every day and can't be expected to keep an effective lid on it indefinitely.
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
Last Edit: 4 years 2 months ago by zhuk.
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HCV-Related Nervous System Disorders 4 years 2 months ago #5803

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Chejai wrote:
I'm really feeling optimistic after reading this. All these conditions that have hit me in the past couple of years - like being described here, especially the peripheral neuropathy, joint pain, night pain is the worst and causes insomnia, a lot of things investigated but told 'it must be age'!!

A couple of years ago I was building bird aviaries, cages, gardening and maintaining a massive property - all on my own. Then went downhill rapidly and had to move to smaller place, lower maintenance, God I'm crippled in pain after mowing the lawn, barely 1/4 the size of previous. No chance building stuff anymore.

The idea I may be free of some of this is awesome! Like you Zhuk I know I can't do anything about spinal nerve impingement & arthritis but would love not to have burning hands and feet 24/7 :pinch:

mm the spinal stuff is weird, I feel like my spine is changing even after 4 weeks, I can now crack my neck again without restriction, getting back into yoga and stuff, I had bad back issues before, I know it will take a long time to address these, but feel now like I can move again, doing headstands and serious back bends again after being off the yoga mat for many years.
Feels like I am living again Chejai, you go for it mate :)
3 years cured, Sof/Dac, thanks Doc Freeman, hepc only a distant memory, go for it ppl
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HCV-Related Nervous System Disorders 4 years 2 months ago #5841

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I heard a term named vagus or vagal nerve disorder. Do you think that hepc can affect this nerve too? I think yes.
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
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HCV-Related Nervous System Disorders 4 years 2 months ago #5991

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Enkel wrote:
I heard a term named vagus or vagal nerve disorder. Do you think that hepc can affect this nerve too? I think yes.
I agree Enkel, given that the Vagus Nerve (AKA Wandering-from Latin- Nerve) is a major cranial nerve and the longest in the body because when it exits the brainstem it branches off to our throat, thorax and abdomen covering our organs and reporting info back to the brain. If it picks up signs of 'infection' it reports to the brain and it sends out an immune response. When you have a chronic infection like HCV that affects more than the liver, then the body is in a chronic state of immune response. The Vagus Nerve is a major part of our nervous system so you can imagine how dysfunctional many systems in our bodies become. It has both sensory and motor functions and controls our breathing, speaking, swallowing, heart rate, sweating, digestive processes and more.
Yes, one thing for sure I'm learning is that having chronic HCV, no matter what level of liver disease that might be present, so many symptoms and conditions e.g. peripheral neuropathy, chronic fatigue, fibromyalgia, and cognitive impairment -'Brain Fog' - are real and related directly to the virus. Yet, so many GP's and some Specialists too, dismiss them and don't consider a connection, despite the fact there is actually a lot of research saying so.
I understand it's hard work for GP's to keep up with all the different issues patients present everyday and I've been 'dismissed' so much over the years with my concerns that 'something's not right' you just end up living with it.

I hardly slept at all last night from the pain in my right arm - like someone dragging a hot blade down my forearm, pins and needles and burning in my hands, can't get comfortable, doze a few hours have wild dreams and wake in pain again! Endless cycle...

Jimmy6429 - yeah I miss Yoga so much. I practised on/off for over 25 years, had to stop about 2 yrs ago because of the pain in my wrists; I don't miss the looks from the embarassing clicking sound of my right hip popping in & out and the squishing sound from my right knee during many postures;)
But if I can look forward to less pain and more flexibility again that would be awesome!
QLD Australia ☀️
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 #woohoo!
AST 24
ALT 26
GGT 50H
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HCV-Related Nervous System Disorders 4 years 2 months ago #6017

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Chejai wrote:
Yes, one thing for sure I'm learning is that having chronic HCV, no matter what level of liver disease that might be present, so many symptoms and conditions e.g. peripheral neuropathy, chronic fatigue, fibromyalgia, and cognitive impairment -'Brain Fog' - are real and related directly to the virus. Yet, so many GP's and some Specialists too, dismiss them and don't consider a connection, despite the fact there is actually a lot of research saying so.

Agreed, Chejai. Think many doctors take the purely 'evidence-based' model of hep, and only consider symptoms valid if you're got clear clinical evidence of liver damage...as you say, for those of us who do not show up overtly in the numbers, the effects can still be real, and considerable. And if you've had documented psych issues in the past, its can be commonly put down to something existing "only in your head" which is frustrating.
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
Last Edit: 4 years 2 months ago by zhuk.
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HCV-Related Nervous System Disorders 4 years 2 months ago #6020

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Yeas zhuk the doctors told me i was just neurotic and stop wasting their time. Evrn when i presented with excema arthritis rh factor and multiple other phisical symptons and yes enkel vagus nerve is definetly involveddue to viral load in brain is my guess.
Jim
3 years cured, Sof/Dac, thanks Doc Freeman, hepc only a distant memory, go for it ppl
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HCV-Related Nervous System Disorders 4 years 2 months ago #6049

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7 weeks into treatment Sof Dac Riba 24 weeks stop taking Nexium no more intergestion Off the Mind drugs ie. Zoloft been taking Xanax 33 years for panic attacks off the Xanax no more anxiety or panic attacks glad I payed for generics have not felt this good in years actually I think I had forgot what it was like to feel good . :cheer:
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
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HCV-Related Nervous System Disorders 4 years 2 months ago #6054

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How impressive is that, Wayne - great to hear!

All the best of luck for the rest of your treatment :)
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
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