Hepatitis C: Post Treatment Issues Community
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4705307 tn?1447970322

How to deal with the Law and PIS

"As many here my remember me I shall try not to over indulge about my treatment, but here goes. I am 58 years old. Was diagnosed with Hep gt3a in 2003. Decided not to treat then because the effects of treatment did not apeal to me. In March of 2012 I found myself in the cardiac unit at UMC in Las Vegas. At which point I was told my heart was fine, mostly. But that if I did not do something about my liver I would not see my next birthday. Scared the living crap out of me. So by October 2012 I started treating with interferon/ Ribarivin. I now find myself in dire straights. My intention was to get well and get on with my life. I could basically copy and paste what alysfreeman has posted, I have yet to recover and my health is a joke. But what is wrong with me.... Trying settle my SSI case is driving me nuts. My lawyer wants an absolute reason for me being such a wreak. I don't what to say, am I crazy? Yes I believe I am fast becoming so. At the moment I waiting for surgery because I have two cysts on my testicles  that hurt like the dickens, no pun intended. I cant focus I feel as if I wish I had just let nature take its course. My aches and pains other than my cysts have no reason to be. I don't know what to do. Doors are closing before I have chance to open them." Does anyone know what it is that is the right diagnosis, I am at a loss. Not to mention I now weigh 140 lbs and when I started to treat I was 209 lbs. Losing only 3 steps in my waistband. From a 34 to a 31. I am just scared because I have no definitive reason for been unable to work a full time or even a part time job at the moment. Will I get any better? Great question, from the seat I do not see it happening any time soon. In fact last week I had a total meltdown and find myself on more rx's. If anyone knows what "IT" is that my lawyer wants from me please tell me. This has turned out to be a path and journey I wish I had never found or started.
6 Responses
7002065 tn?1443073614
it's a life towards death, interferon is a brain damaging drug
317787 tn?1473358451
Timothy, I would think you could use Post Interferon Syndrome.  In addition you would want to write down every thing that you are experiencing.  Everything, even if you think it doesn't matter, it does.  My husband was able to get SSDI but only because he wrote down all of his symptoms.
Good luck
747988 tn?1396536878
IT is Post Interferon Syndrome. Addled  brain,depression,anxiety,insomnia,widespread body pain,parasthesias,weakness,extreme fatigue,sicca syndrome-they are all the symptoms I took to my liver consultant time and time again until finally after 4 years I was diagnosed with Post Interferon Syndrome. I think they expect it to take 2 maybe 3 years to recover but when it continues longer than that they finally concede.I have reported my side effects to the drug company and something called Yellow Card online,the more of us that do the better they will understand the impact on our lives and the numbers affected.It has now been 10 yeasr since "successful" treatment and while I can pace myself-i.e. do one small task a day and keep some sort of balance,if I am forced to do more or any stress is added into the mix I go into meltdown again and the fatigue wipes me out. It's like being on a slippery seesaw and trying to keep it balanced by standing in the middle at all times,once you lose your balance you slide off and have to start all over again. I do hope you can find some balance old bean.
Avatar universal
I insist on writing down "post-interferon syndrome" at every doctor visit I now undertake for symptoms relating to the administration of interferon.  Gotta make the doctors understand.
408795 tn?1324935675
If you can't get your doctor to write a diagnosis for you, I would see an Attorney to handle your SSI case.  There are many around and if you find one who works specifically with the homeless or poor people, they don't charge that much.  Besides, they can take their cut out of the back pay.  good luck!
317787 tn?1473358451
Thinking about you Tim.
Writing down every single thing that is wrong with you is going to help you.
Tired, weak, can only stand for...can only sit for...pain in...., can't shop for yourself, can't sleep. Brain fog/confusion, anxiety, etc. Can't pay your bills, or whatever your particular problem is  Try going back to the original doctor and ask for help.
SS will ask you for a sample of your day
I don't know if this will help you but we used a lawyer called Binder and Binder. They are out of New York.  They advertise quite a bit here and people made fun of us but B&B got the job done.  It took 18 months before our lawyer wrote to a judge asking for an early determination.  We paid nothing until my husband won the case.

I was thinking of you, I hope you are ok, Dee
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