Greg Jefferys Hepatitis C blog deals with all the issues associated with hepatitis C
Hepatitis C is generally thought to be a liver disease and only associated with damage to the liver (in medical terms this is called hepatotropic). However science has discovered that the damage from the Hepatitis C virus actually extends beyond the liver into the entire body.
A LOT of doctors still do not know that Hepatitis C can cause peripheral neuropathy or that cryoglobulinemia caused by Hep C can cause lots and lots of severe health problems.
Hepatitis C can be the cause of many autoimmune diseases, including lymphoproliferative diseases, cryoglobulinemia, membranoproliferative glomerulonephritis, thyroiditis, and others.
In this post I am going to talk about Hep C, Cryoglobulinemia and Peripheral Neuropathy.
Cryoglobulinemia is the single most common condition arising from having Hepatitis C and causes some of the most serious Hep C related health issues; but there is more than a 50% chance that your doctor has not mentioned it to you. Cryoglobulinemia is a difficult word to pronounce but basically means that your blood has become “thick”. This is due to the presence of abnormal antibodies (called cryoglobulins) that come from hepatitis C virus stimulation of your white blood cells. White blood cells are the “warrior” cells that try to fight the Hep C virus and they produce antibodies to help them attack the Hep C virus.
The thickened blood causes many health problems, including rashes, unbearable itching and more. But in this post I am going to focus only peripheral neuropathy, a devastating health problem caused by Cryoglobulinemia.
Peripheral neuropathy is when the the peripheral nerves start to die, usually starting from the tips of the longest nerves in a person’s limbs, in the hands and feet.
The Peripheral nerves are sensory nerves that carry the sense of touch and also the motor nerves that enable you to move using your muscles. They run from your spine to your extremities, that is legs, toes, arms and fingers.
Peripheral Neuropathy is when the nerve is damaged, or dies, and leads to pain, weakness, numbness or tingling. Usually it first effects the sensory nerves in your feet, then legs, then hands then arms. In the case of Hepatitis C induced peripheral neuropathy, the nerve’s death is generally progressive. So the nerves begin dying at the tips of the toes and, later, fingertips and then the neuropathy gradually moves up the limbs.
Up to 2014, when I learned that I had Hepatitis C, I had had only one serious health problem, that was peripheral neuropathy. That was my “Big Health Scare” and it started in 1999, when I was 46. My health scare was the onset of the nerve disease called peripheral neuropathy.
At that time, I had been teaching Art and History in high school for a couple of years. One day I noticed that my toes were going numb.
I went to my family doctor and after a few tests he referred me to one of Australia’s leading neurologists.
After a series of tests, the neurologist confirmed that I indeed had peripheral neuropathy and she explained that this disease was when one’s nerve’s start dying from the periphery (the outer ends) and that the dying slowly continued up the nerves from the tips of one’s toes and fingers, until one lost all feeling in the feet, the hands and then the limbs. As well as losing the sense of feeling your muscles start to fade because the nerves are what tell your muscles they need to exist. This is called “sensory and motor peripheral neuropathy” the loss of the sense of touch and the loss of the muscles. Like motor neurone disease in that the muscles and motor abilities disappear but worse because you also lose the sense of feeling.
I mention my peripheral neuropathy because in 1999 / 2000 neurologists did not know that Hep C causes peripheral neuropathy. It was only fifteen years later, in 2015, that I learned that PN was caused by Hep C.
Peripheral neuropathy shows up in the longest nerves first, so in most people the toes start to go numb, then the feet, then the legs and then the fingertips and so on up the limbs. In some cases, this nerve dying progresses fairly slowly but in other cases it progressed quite quickly. As the nerves die the muscles associated with those nerves also begin to waste away.
So, I got numb toes in 1999 and the disease progressed quite fast up my feet, past my ankles and into my lower legs. Then it started in my fingertips and hands. All the muscle tissue in my feet disappeared and the neurologist told me that at the rate that the neuropathy was progressing I would lose the use of my legs within 18 months and would probably need a wheelchair to move around.
Of course, I freaked out!
Apart from seeing my limbs wasting away, the most terrible thing about this was that the neurologist could not tell me what was causing my nerves to die. In 1999 no-one knew that Hep C could cause peripheral neuropathy!
It was not until 2015 that a doctor finally told me that my peripheral neuropathy was caused by Hep C.
If your Hep C infection has caused the onset of peripheral neuropathy the very best thing you can do is get rid of the Hep C ASAP. Once the Hep C is gone the cause of the PN will be gone. If there has not been too much nerve damage, in a best case scenario, your nerves may heal or you may end up with a few numb toes.
However if the PN has progressed quite a lot (as it had in my case) there will be too much damage for the nerves to completely heal and you will not be able to regain lost muscle tissue or feeling in the areas where the nerve damage can not be repaired.
In my case I have no muscle tissue in my feet or 12 inches above my ankles. On a positive note the nerves in my fingers and hands have completely healed and I regained full feeling in my hands and fingers and did not lose any muscle tissue. My calf muscles permanently have benign fasciculation syndrome, which is persistent muscle twitching, tingling, and numbness but they still work fine and I can walk without any problem.
So this is just another reason for getting rid of Hep C as soon as possible. Nerve damage is something to be avoided.
The email below was shared after I posted this article.
Your post on PN is the first time I’ve seen anything on this issue of Hep C and Peripheral Neuropathy.
If you remember me I was recently cured of hepatitis c. I do have PN and have been wondering what the heck caused that to happen. Then, after being cured of hepatitis c, I have noticed that all the feelings came back into my hands and fingers. My feet still feel cold and numb but not as bad. So I gather from reading your article that they may have healed somewhat and then the damage will stop progressing. I hope that will be the case.
I’ll say it again this is the first time I’ve heard of this but I’m glad I ran into this article here. It sounds like you were lucky you got it cured before you had total damage.
All right thank you….
Hepatitis C virus (HCV) is essentially hepatotropic but its manifestations can extend beyond the liver. It can be associated with autoimmune diseases, such as mixed cryoglobulinemia, membranoproliferative glomerulonephritis, autoimmune thyroiditis, and lymphoproliferative disorders. The mechanisms that trigger these manifestations are not completely understood.
We describe a 48-year-old man with chronic HCV infection (circulating HCV RNA and moderate hepatitis as indicated by liver biopsy), cryoglobulinemia, and sensory and motor peripheral neuropathy. The diagnosis of multi-neuropathy was confirmed by clinical examination and electromyographic tests. A nerve biopsy revealed an inflammatory infiltrate in the perineurial space and signs of demyelination and axonal degeneration. The patient had no improvement of neurological symptoms with the use of analgesics and neuro-modulators.
He was then successfully treated for his Hepatitis C. Six months after the end of therapy, the patient had sustained viral response (negative HCV RNA) and remission of neurological symptoms, but cryoglobulins remained positive.
Source: Brazilian Journal of Medical and Biological Research (2005) 38: 1729-1734
Can Hep B Cause Peripheral Neuropathy, Can Hep C Cause Nerve Damage, Can Hep C Cause Neuropathy, Can Hep C Cause Numbness, Hep C Cause Peripheral Neuropathy, Hepatitis C And Peripheral Neuropathy, Peripheral Neuropathy In Hepatitis C
Greg Jefferys’ blog is provided for informational purposes and is not intended as Medical advice, diagnosis, or treatment.
Whilst Greg Jefferys is doing a PhD it is not in medicine. Any advice offered is offered in good faith and based on an extensive general knowledge of Hepatitis C and access to generic Hepatitis medicines Greg Jefferys has acquired through his work as an advocate and activist
The Hep C Buyers Club is not a company or corporate entity but simply a loose structure intended to offer a free information to people with Hepatitis C
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Thank you for sharing such important information. A friend of mine who’s never had hepc, suffers from périphérique neuropathy on both his feet and went through surgery, which did not help at all! May be this statement can help him and his doctor… Very useful, thank you again ?
Oh… I can not even imagine how surgery would be helpful for PN. Diabetes is another common cause of PN.
Hello Jeff, this is the first time I’ve seen anything on this issue. If you remember me I was recently cured of hepatitis c. I do have PN and have been wondering what the heck caused that to happen. After being cured of hepatitis c I have noticed that all the feelings came back into my hands and fingers. My feet still feel cold and numb but not as bad. So I gather from reading your article that they may have healed somewhat and then the damage will stop progressing. I hope that will be the case. I’ll say it again this is the first time I’ve heard of this but I’m glad I ran into this article here. It sounds like you were lucky you got it cured before you had total damage. All right thank you….Chuck Wilson
Thanks for sharing your experience.
Yes, once the Hep C is removed the peripheral neuropathy usually stops progressing and some healing can occur in nerves that have not been too badly damaged.
I was just reading over this information about peripheral neuropathy again. I have been cured of hepatitis C and as I told you before I noticed that my hands are no longer numb & tingling. I still have tingling and numbness in my feet and running up my calves. It seems to have diminished somewhat but I kind of think it’s going to remain and may even get worsre. My number one disappointment about this issue is the fact that my doctors never mentioned anything about it. The doctors include my primary care nurse practitioner and my gastroenterologist. I did mention to my primary care a nurse practitioner that I have learned that hepatitis c causes peripheral neuropathy. He gave a quick response acknowledging that yes that can happen and then went about is merry way. Oh he did refer me to a Podiatrists which I have not utilized yet. My bottom line is I just hope that healing takes place in my nerves that have already been damaged. I thank you for taking the time to post the information about the PN. I wish you well and I hope to hear that your symptoms are diminishing also. Thank you and take care … Chuck Wilson.