Hi, thanks for replying to my post. I am in the process of my doctor trying to figure out why I am having so many neurological symptoms that have been getting worse over the last few years. Ironically, the doctor discovered I had low b-12 but apparently not low enough to be symptomatic, then they found a cyst in the left frontal cortex of my brain but it is supposed to be asymptomatic as well!! Then what is cause my symptoms!!!! When everything first started, I was told I would be fine once treatment ended! I also get told constantly that it is just getting old!!!! Before the treatment I had perfect vision, I was active and rarely had pain in my body. Since then I can barely walk when I first get up from either sitting or laying down. Luckily, I can still walk ok after I work out the stiffness, but even my gait has changed. I realized the treatment caused long-term issues because I had so many behaviors permanently change after. It sounds strange but I never slept on my back until the treatment, I always slept on my stomach and that changed. Also the foods I liked changed completely, I now eat certain foods that I never ate and don't eat ones that I loved! If the treatment can force a change in my physiology than I am sure it is capable of doing lots of other damage. When I try to talk about to anyone else they just think I am being over dramatic. I turn 50 this summer coming but most of the time I feel like I am very old!
I noticed a big difference in taste too. I am in pain all the time, mainly my legs. During treatment my left leg had a buildup of fluid on the knee, they didn’t know what it was. I now need a knee replacement where it occurred. I have osteopenia from treatment and I know it’s from treatment because five yrs previous I had a bone density test and was told I had the bones of a 20 ur old. I also get scans all over my head, developed eye damage, etc etc. it is so hard living because unless you do the 12 month long treatment someone can never know or understand what it is like to feel this bad, I don’t even sleep. It is so outrageous that the doctors can pocket their money and walk away, the ones that did this to us should have to pay in some way.
Hello @bulldogmama4, and welcome to connect. I think you have come to the right place to find information and start discussions with people that have similar experiences. Can you tell us a little more about your son?
Hi, my name is Deidre, I am new to this site but when I read what you said to Lisa it really hit home. I have all the same issues, chronic fatigue, vision issues, stomach issues, memory problems and now I am having balance issues and dropping things all the time. I have asked repeatedly (my doctor) if it could be the treatment and he says no, doubt it. He is a great doctor, has been wonderful to me but I live in PEI, Canada where not much happens, especially not research on medications. I have already said but I will say it again..the relief I feel seeing that I am not crazy is overwhelming. Thanks, Deidre
Hi, thanks for replying to my post. I am in the process of my doctor trying to figure out why I am having so many neurological symptoms that have been getting worse over the last few years. Ironically, the doctor discovered I had low b-12 but apparently not low enough to be symptomatic, then they found a cyst in the left frontal cortex of my brain but it is supposed to be asymptomatic as well!! Then what is cause my symptoms!!!! When everything first started, I was told I would be fine once treatment ended! I also get told constantly that it is just getting old!!!! Before the treatment I had perfect vision, I was active and rarely had pain in my body. Since then I can barely walk when I first get up from either sitting or laying down. Luckily, I can still walk ok after I work out the stiffness, but even my gait has changed. I realized the treatment caused long-term issues because I had so many behaviors permanently change after. It sounds strange but I never slept on my back until the treatment, I always slept on my stomach and that changed. Also the foods I liked changed completely, I now eat certain foods that I never ate and don't eat ones that I loved! If the treatment can force a change in my physiology than I am sure it is capable of doing lots of other damage. When I try to talk about to anyone else they just think I am being over dramatic. I turn 50 this summer coming but most of the time I feel like I am very old!
My son gets electric shocks to face and body. Hands and joints swell and very painful. Starting to get some brain fog has major gastrointestinal problems with no know cause. Many other thins that are unexplained also. He can not do much at all anymore. Doctors think he just wants drugs which isn’t true . He is really suffering . He doesn’t drink or anything . We are in process of looking for doctor that will listen and not tell him is is depressed. Seeing the article about long turn effects has help him feel that maybe some help is out there somewhere. After the last doctor wouldn’t listen he has refused to go anywhere. After reading article he is again will to search for some help. If anyone knows of doc anywhere familial with post interferon syndrome please let me know. He is 51 and about ready to just give up... this has given him hope
Just posted more. He doesn’t use computer because his hands swell to much but I do read post to him. He had treatment 15 years ago and had symptoms soon after that now have gotten much worse. VA put him on about 10 different meds and almost killed him . All for behavior and depression ( not Real problem ) . He finally wouldn’t go back. He has been to many docs and had many test but besides his back issues no on believes him. Now things are so much worse. He eats very little because of gastro issues and bloating. Any helpful info is appreciated before we look for new docs.
Just posted more. He doesn’t use computer because his hands swell to much but I do read post to him. He had treatment 15 years ago and had symptoms soon after that now have gotten much worse. VA put him on about 10 different meds and almost killed him . All for behavior and depression ( not Real problem ) . He finally wouldn’t go back. He has been to many docs and had many test but besides his back issues no on believes him. Now things are so much worse. He eats very little because of gastro issues and bloating. Any helpful info is appreciated before we look for new docs.
I really feel for him, I have constant stomach problems too, where one dr. Had to go in and get rid of the sludge, whatever that means.
My main complaints from 12 months of treatment hell are that I no longer wake up feeling good, even when I had hep c morning was always a good time for me.
Has your son ever had a bone density test to find out how the treatment affected his bones? If not, he needs to find out.
An eye exam should be done too.
It is unfortunate that I do not have a computer right now, it is so hard to type on this phone. I will be getting a computer in another month so it will be easier.
Also, there was a handbook that the va doctor’s were to follow during treatment. He should have had intermittent heart exams, bone density tests, eye exams, etc. throughout his treatment. Was he given these tests to protect him? This is how I found out how really negligent the doctor was who treated me, not once was I referred for any test of any kind while they were pocketing 100,000.00, that was just the amount they got for treating one person. They didn’t care about me, they only cared about the money.
HELLO EVERYONE...SORRY I HAVEN'T BEEN ON HERE FOR A WHILE BUT HAD SURGERY AGAIN ON MY CRUMBLING BONES FROM INTERFERON THERAPY. WE R GOING AFTER MERCK PHARMA...ANYONE WITH ME? I HAVE BEEN IN CONTACT WITH THEM JERKS.
I HAVE A PODCAST NOW N EVERYONE PLS GET ON IT N SHARE YOUR STORY OF INTERFERON THERAPY N WHAT IT HAS DONE TO U.
HELLO EVERYONE...SORRY I HAVEN'T BEEN ON HERE FOR A WHILE BUT HAD SURGERY AGAIN ON MY CRUMBLING BONES FROM INTERFERON THERAPY. WE R GOING AFTER MERCK PHARMA...ANYONE WITH ME? I HAVE BEEN IN CONTACT WITH THEM JERKS.
I HAVE A PODCAST NOW N EVERYONE PLS GET ON IT N SHARE YOUR STORY OF INTERFERON THERAPY N WHAT IT HAS DONE TO U.
I received an email and remembered your name. Is this really happening?!
And didn’t we talk on the phone a long while back, having trouble with my memory.
I have contacted so many different agencies to get justice and I have been turned down.
It is so weird to hear from you because getting justice is always at the back of my mind.
I recently thought of getting a wheelchair and sitting outside with placards letting everyone know they are endangering their life by having Read as their doctor, and how she ruined my life.
I was told approximately six months ago that I have osteopenia and now they are telling me I need to have my left knee replaced. I am in so much pain every day, I can barely walk, and can’t even get a pain pill. My quality of life does not exist. This was the same knee that swelled up to twice it’s size from treatment.
Two years previous to treatment I had a bone density test and was told I had the bones of a twenty year old.
This is not from old age, I can prove it was from treatment. The anger I feel never goes away, especially after finding out that we were supposed to have a bone density test intermittently throughout those long grueling 12 months!
HELLO EVERYONE...SORRY I HAVEN'T BEEN ON HERE FOR A WHILE BUT HAD SURGERY AGAIN ON MY CRUMBLING BONES FROM INTERFERON THERAPY. WE R GOING AFTER MERCK PHARMA...ANYONE WITH ME? I HAVE BEEN IN CONTACT WITH THEM JERKS.
I HAVE A PODCAST NOW N EVERYONE PLS GET ON IT N SHARE YOUR STORY OF INTERFERON THERAPY N WHAT IT HAS DONE TO U.
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I noticed a big difference in taste too. I am in pain all the time, mainly my legs. During treatment my left leg had a buildup of fluid on the knee, they didn’t know what it was. I now need a knee replacement where it occurred. I have osteopenia from treatment and I know it’s from treatment because five yrs previous I had a bone density test and was told I had the bones of a 20 ur old. I also get scans all over my head, developed eye damage, etc etc. it is so hard living because unless you do the 12 month long treatment someone can never know or understand what it is like to feel this bad, I don’t even sleep. It is so outrageous that the doctors can pocket their money and walk away, the ones that did this to us should have to pay in some way.
Hello @bulldogmama4, and welcome to connect. I think you have come to the right place to find information and start discussions with people that have similar experiences. Can you tell us a little more about your son?
hey!! nope, u r not crazy n as time goes by i seem to just get worse ugh
has anyone ever checked ur magnesium?
My son gets electric shocks to face and body. Hands and joints swell and very painful. Starting to get some brain fog has major gastrointestinal problems with no know cause. Many other thins that are unexplained also. He can not do much at all anymore. Doctors think he just wants drugs which isn’t true . He is really suffering . He doesn’t drink or anything . We are in process of looking for doctor that will listen and not tell him is is depressed. Seeing the article about long turn effects has help him feel that maybe some help is out there somewhere. After the last doctor wouldn’t listen he has refused to go anywhere. After reading article he is again will to search for some help. If anyone knows of doc anywhere familial with post interferon syndrome please let me know. He is 51 and about ready to just give up... this has given him hope
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Helpful -
Hug
1 ReactionJust posted more. He doesn’t use computer because his hands swell to much but I do read post to him. He had treatment 15 years ago and had symptoms soon after that now have gotten much worse. VA put him on about 10 different meds and almost killed him . All for behavior and depression ( not Real problem ) . He finally wouldn’t go back. He has been to many docs and had many test but besides his back issues no on believes him. Now things are so much worse. He eats very little because of gastro issues and bloating. Any helpful info is appreciated before we look for new docs.
I really feel for him, I have constant stomach problems too, where one dr. Had to go in and get rid of the sludge, whatever that means.
My main complaints from 12 months of treatment hell are that I no longer wake up feeling good, even when I had hep c morning was always a good time for me.
Has your son ever had a bone density test to find out how the treatment affected his bones? If not, he needs to find out.
An eye exam should be done too.
It is unfortunate that I do not have a computer right now, it is so hard to type on this phone. I will be getting a computer in another month so it will be easier.
Also, there was a handbook that the va doctor’s were to follow during treatment. He should have had intermittent heart exams, bone density tests, eye exams, etc. throughout his treatment. Was he given these tests to protect him? This is how I found out how really negligent the doctor was who treated me, not once was I referred for any test of any kind while they were pocketing 100,000.00, that was just the amount they got for treating one person. They didn’t care about me, they only cared about the money.
HELLO EVERYONE...SORRY I HAVEN'T BEEN ON HERE FOR A WHILE BUT HAD SURGERY AGAIN ON MY CRUMBLING BONES FROM INTERFERON THERAPY. WE R GOING AFTER MERCK PHARMA...ANYONE WITH ME? I HAVE BEEN IN CONTACT WITH THEM JERKS.
I HAVE A PODCAST NOW N EVERYONE PLS GET ON IT N SHARE YOUR STORY OF INTERFERON THERAPY N WHAT IT HAS DONE TO U.
MY PODCAST IS: ANCHOR.FMURL/LISA-DESTELLA 3
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Hug
1 ReactionI received an email and remembered your name. Is this really happening?!
And didn’t we talk on the phone a long while back, having trouble with my memory.
I have contacted so many different agencies to get justice and I have been turned down.
It is so weird to hear from you because getting justice is always at the back of my mind.
I recently thought of getting a wheelchair and sitting outside with placards letting everyone know they are endangering their life by having Read as their doctor, and how she ruined my life.
I was told approximately six months ago that I have osteopenia and now they are telling me I need to have my left knee replaced. I am in so much pain every day, I can barely walk, and can’t even get a pain pill. My quality of life does not exist. This was the same knee that swelled up to twice it’s size from treatment.
Two years previous to treatment I had a bone density test and was told I had the bones of a twenty year old.
This is not from old age, I can prove it was from treatment. The anger I feel never goes away, especially after finding out that we were supposed to have a bone density test intermittently throughout those long grueling 12 months!
-
Like -
Helpful -
Hug
1 ReactionI can’t do it, I don’t have a computer.
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Hug
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