Social Security

[notalltaken]

I am 53 years old and am trying to get my disabled widows benifits. In addition to having gone through the interferon treatment in 2001 I have had    2 back surgeries. My bones do hurt and I have chronic fatigue and I have wondered why. From what I am reading here it could very well be from the interferon treatment. The problem is getting Social Security to recognize this if the medical community will not. I must say though that even had I known that I would have long term side effects from treatment I would have done it anyway. Hep C would have killed me as it did my younger sister and the side effects I can live with. I'm not complaining but it is impossible for me to be gainfully employeed due to the pain and fatigue and as I stated above. Social Security will not accept it if the medical community wont. Is anyone else dealing with Social Security due to the long term side effects of treatment?

[otterwatcher]

indeed. it felt so good to finally get a proper diagnosis. just keep on at your consultant,I'm going to write to Roche and inform them of my side effects,the more of us that do the better I think,maybe then it'll be easier for people to receive a quicker diagnosis.
I know what you are going through and how limited your once full life is by these cruel side effects.
wishing you all the best xxx

[notalltaken]

Wow. All these comments are all too familiar and bring me to tears. I can't believe there is actually a name for it. Now I don't have to say. "I don't know what's wrong with me."

[otterwatcher]

cheers! it took 5 years of repeated appointments that like you,really whacked me out for days/weeks afterwards and all the time being told 'It can't possibly be the interferon!' to finally the admittance that about 4% OF their patients are left with Post Interferon Syndrome and suffering the same life limiting side effects. crazy that it takes so much effort to be listened to. you're right-nobody understands chronic fatigue-I liken it to permanent jet lag-it's NOT like being tired,rest and you'll feel refreshed-you NEVER feel refreshed and sleep is hard to find.The pain is constant and can move around the body or be everywhere.Add to this confusion,sensory overload etc etc etc-it's no life.I used to be out walking every day,even through tx but 3 months post tx I suddenly started to go backwards.Ps I do doctors appointments by phone if poss and grocery shopping is by online delivery,only go out maybe once a week-can't do people for long.

[Frank J. Perrotta]

Congrats on finally getting full disability with that diagnosis of PIS.

The problem with pacing oneself is the rest of the world really doesn't understand CHRONIC fatigue syndrome. Most people get the fatigue thing but not the chronic thing... and the health care providers can be the worst! It takes me nearly two days to recover from a doctors appt, get up early for the transport, the wait times, the visit with the doc, the wait time for the pick up for transport... crazy exhausting.

Then expect friends to understand when they ask you to be ready at 10am means that you will have two days to recover ... and wonder if it is really worth the favor of that grocery shopping trip?!?!

ANYWAYS, congrats on the win. f

[otterwatcher]

5 years post treatment I finally received a diagnosis of Post Interferon syndrome from my consultant and was awarded full disability in the uk-same symptoms,pain fatigue,confusion etc.I told my consultant I needed a diagnosis for benefit purposes and I think that helped.They can only fob you off with it'll get better for so long! I am now coming up to 8 years post treatment and altho I have occasional better days,I have to pace myself very carefully to acheive those and be mindful not to overdo it on those days-I think you may be caught in that cycle-have a look at the advice for chronic fatigue syndrome while you wait to see more consultants,you might find pacing helps you a little too.
all the best

[notalltaken]

Thank you very much for your helpful information.

[Frank J. Perrotta]

I did win my case based on my long term side effects after treating and "curing"! It was a very long battle with even one Judge being overturned and another Judge re-hearing my case *a very rare occurrence - less than 5% of cases if I remember correctly.

I won based on my medical history which was so large they had to wheel it in on a cart! Basically if you cannot stand or sit and work ___ hours a week they you are disabled. Due to my fatigue and pain issues I was judged disabled 100%.

When I went into the office to start the process I was shown a list of "Claimant Representatives". The officer who processed my claim wasn't suppose to point to anyone special but he did... the Representative he pointed to was a specialist in Hep C claims.

I don't know if you need a lawyer or not or if things have changed since my claim or if things are different state by state... but when I had my case they only got any money if you won and there was a cap on the amount they could get no matter the time spent on the case. This is all done thru the SS and you never write a check.

I would not even start a claim without having a rep do any of the work for me. That is what they are there for.

Good luck.

[nan535]

I can't advise you on post treatment side effects but I would just like to suggest you contact an attorney that specializes in Social Security disability
claims if you haven't already.  My mom was turned down when she applied on her own and then approved after she consulted an attorney.

Good luck
Nan