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178275 tn?1197827799

after effects of tx

I am "old" here, but haven't posted lately.,I have what i call  " post hepatitis C residual effects" I am tired all the time and can fall asleep in 5 min (which was diagnosed thru a sleep study),  I have good days and poor ones. I have ,very bad short term memory loss, confusion, inability to stay focused (ding bat or scatterbrained lol, thats what they could label me), have trouble finding the right words,it is really bad and embarrassing (like I can say "Get your clothes out of the windshield" &  asked my husband how many tacos he wanted, but I instead said:  how many tobacco's do you want? That was a funny one), I cant stay on task, I will have five chores going and non are finished til I realize it. And some more, but you get the idea. I got on disability thank goodness. I am 60 and live in AZ. I dont know what day it is, cant type as well as I used to, its exhausting.  Ok thats all I wanted to say, Thank goodness I dont have any of the serious ones they mention like lupus, high BP, blood abnormalities. etc
11 Responses
9648 tn?1290094807
Wow your name certainly looks familiar! I'm really bad with names which makes the internet a challenge, but if I'm not mistaken didn't you put together an online chart of members and their statistics, etc? That was a long time ago.

So sorry to hear you are having trouble. I've had the "pick a noun any noun" syndrome (as I call it) for a long time. I don't think it has anything to do with tx or HCV in my case, and it's not too bad, but silly when I say stove instead of refrigerator. My mental associations are interesting.

How long ago did you treat and when did you clear?
Avatar universal
I remember you!!  I have many similar issues that you describe.  My brain misfires all the time.  Like I can think, I need to pick up my glasses and put them in my eyeglass holder and put them in my purse and then, what comes out of my mouth is, 'I need the hangers'.  ????  Does that make any sense whatsoever?  NOT!  Sometimes people will look at me like I'm a nutcase.  I don't have Alzheimer's, but this is a bit much I tell you.  I am only 49, but after doing several TX's w/o clearing, my brain was so mush that I too, ended up going on SSDI.  For me, I feel like I have less self-esteem and feel like I'm judged by people, for having to go on disability.  But, that's me.  Unless somebody is really close to me and sees this type of thing happening with my brain, they really have no idea what it's like.  My husband sees it and thoroughly understands.  When I went through the Soc. Sec. Psychological tests, their own doctors said I was disabled, based on that and not the Hep.  Anyway, I totally remember you.  Susan400
1225178 tn?1318984204
I don't remember you because I just started this wonderful life in March, but I can identify with all that you say. Sadly for me, it started even BEFORE tx, now I'm doing tx and it is worse. I think maybe both the virus and the meds mess up the brain. I have had to quit doing part of my job because I can't focus long enough to do it right.
223152 tn?1346981971
Hi there.  I actually think you were done treating before I ever started in 2005, but I remember you.  So much of what you are saying sounds like Alzheimers or just old age.  I too have those searching for words moments, and usually let the hubby fill in the blanks.  I honestly don't know if it could be beginning Alzheimers or just a slowing process or some residual of drug use 40+ years ago.  I am not ready to attribute it to hepatitis C or the treatment, however, mainly because I never had the "brain fog" that others talked about.

You are on disability for confusion?  What is the diagnosis used for the disability applicaton?  I am sorry I cannot help in any way.  I call myself Mrs.  Malaprop.

frijole
233616 tn?1312790796
Hey I remember you!!!  So sorry you're having these issues.
I've had some as well....one is that the brain has developed all kinds of spots....they say it's common in hcv, well not super common, but much more common than the general populace.
What you are describing could be from these little plaques, which they say form in response to strokes, or to autoimmune or infections (like hcv) and that these white spots are actually demyenlinated areas. The nerves loose their myelin sheath and over react or get circuits crossed.  That's why sometimes folks who are not dyslexic will start transposing words (reversing letters) or pick the wrong word....you go for a word starting with T, but the file is jumbled.  The good news is that many times this type brain anomaly is slow progressing unlike some forms of alheimer's which progress more rapidly. The bad news is there's really nothing they can do for it, and they are not sure what causes it.....so they say.
I have a theory that based on how MS can do a similar thing to the brain (the white spots on an MRI brain are clustered toward the center of the brain)...hcv may itself be a trigger for demyelination.  I base that on things I've read, and on knowing (and my reumatologist just confirmed part of this this week when he acknowledged that fibromyalgia, also a condition where the nerves become overly sensitized and slightly demyelinated, is MUCH more common in hcv.  
So far, my neurologist has not acknowledged the connection, but then he is not very familiar with hcv, and I didn't really press it with him.
Bottom line is, even if one clears the virus there can still be systems that are taken down by this disease. The endocrine system is one, and I always suggest you have every gland tested not just the thyroid, since dysfunction in any one of them can keep one in exaustion mode continually....or conversely they can make us hyperactive, it all depends on how the body deals with the way hcv shuts down or alters certain processes.
But, when it comes to the brain, much is still unknown.  I'd settle for the fatigue, the transposing, misspelling, it's annoying and I get tired of constantly having to go over words...but what's disconcerting is now I've developed constant tremors on my entire right side, head to toe.
The reason I mention this is not to scare you, it's simply to say, there may be actual reasons you are feeling the way you do.  An MRI will tell you if your brain is still ok....I'd try to get one, simply because if you did have a TIA (small stroke) there are meds that can help prevent a reoccurance.
If you also go to an endocrinologist they can screen to see which glands need meds, and that will improve your energy level. I had 3 systems go down, and had so little energy it was pathetic. After much research I decided my pituitary might not be functioning. (a lot of hcv people have low function) and after my doctor poo-pooed the idea I went to our teaching hospital and got tested anyway, and sure enough it was only working at 20% of normal.

Anyway, so there are things you could get checked maybe that might make you feel better, or at least prevent further damage to your brain. Hope that helps.
Good to see you again.

mb
178275 tn?1197827799
wow, I didnt think 3 ppl would reply that they remember me!  I must of been a bit of a
"celebrity" lmao, or a frequent poster I would bet more likely.  I remember you GreatBird, susan, and merry!  So many good ppl I met back during the tx days....yes I did try to post a "roster" of the folks, tx dates, SVR, state lived in, etc.  It was interesting, but messy since I was not a PC secretary.   Anyhow, I got disability for the Hep C, post polio (both cause fatigue, brain fog, & so on an so forth)  The neurologist that SS sent me to really helped, he found several oddball things about me - psychological and neurological, and I was forgetful and dingbatty enuf that I couldnt hold a job even if I wanted to & I did, who wouldnt $$ is very nice.  I forgot to go to the job interview, lol... it  is true.  I told my husband that I thought I was better enuf to go back to work, and he said "Oh no, you're not".  

Susan, I can really relate to your story.  I bet the glasses got confused with hangers cuz they do hang off your ears!  Sometimes I can analyse the speech faux pas.
I too felt rather worthless not having a job any more and self esteem went down the tubes.  I was forgetful for years before tx though, maybe from peace love and drugs of the hippie days, or being ADD.  
The brain MRI I had recently and about 4 years ago, they both say every thing is normal there.  I went to a neurologist again recently to find out what the heck it could be that is continuing to make me so forgetful, easily confused, and "word salad".  He said it was mild to moderate memory loss, which is normal for my age.  I thought he was as dingy as I am!   hahahaaahaha   but at least he said it is not Alzhiemers (thank god!).  

Merry Be,  I am sorry to hear you got some bad symptoms, but I can relate to the ones we share.  My glands are fine, I did take thyroid meds for awhile but after tx - about a yr later I went off of it,and the doc cked and it was normal.  I better get to bed, didnt realize it was so late.   By the way I was SVR at 1 month, 6 months and a yr, then finally at 5yrs  Yeaaaa!    
Avatar universal
sakes alive, a visitor  from another era - good to hear from you! Sorry, but I see no problem - they durn well  shouldn't be leaving their clothes on the windshield, in the washing machine, or in the dishwasher if they know what's good for them! ( I like to think that as my brain is aging the big picture is getting clearer - never mind the details).

Besides, reality is a bit overrated IMHO; as long as one can be happily demented it sounds pretty good to me (I'm planning to be one of the old farts at the nursing home who sneaks off in the middle of the night and pees in the potted plants) . Like the line from the Robert Earl Keen song : 'the road goes on forever and the party never ends'
Avatar universal
I remember you and it's very nice to see you're posting here.
I am sorry that you have residual side effects from treatment. I hope they will improve with time.

Be well,
Mike
92903 tn?1309908311
( I like to think that as my brain is aging the big picture is getting clearer - never mind the details).

Here! Here!
92903 tn?1309908311
Oh yeah, I forgot. I remember you too, HippyChickie. Nice to see ya.
178275 tn?1197827799
Great to see there are still posts responding to my initial one.  It is really great to see I am not the only one (and probly not an anonamaly *spelling* sheesh ) Thanks goodness for the backspace bar, i would probly not finish any posts for my impatience would overwhelm me)   Willing - - - I laughed at your comment about being in a nursing home and peeing on the plants, I worked at homes for many years...we did have quite a few pee'ers.  One old guy said "look out for the lake"  and there he was in the nude, after pee'in off the end of his bed.  Another guy was peeing out in the courtyard, much to the horror of the old ladies, so we had to pin his fly shut.  Lmao. He would come to us and ask to have it taken off, then we knew where to take him.
Mikes ---It wont get better, but thanks for the good wishes.  it has only gotten worse.  But I dont go out much so I dont get wound up and blabbering the wrong words  in public anyway.
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