Misdiagnosed

[Better Angels]

Mornin' All:

I was reading all the posts about how people were diagnosed and I got angry. About 5 years ago Greg was diagnosed with IBS!!! His symptoms were stomache pain and contant diarrhea. It became obvious that he could no longer eat any red meat, and he started losing a lot of weight. This went on for some time and then late in 2002 Greg started complaining about being confused and forgetting things. I just teased him about getting old (he's just 51) but I blew if off. Then one day Greg came home from work (truckdriver) and said that he got lost just a block away from the yard, he actually looked scared and for the first time I was worried. We thought it was the AD he was on to control the bowel so he made an appointment with the Doc. Several tests were done; Lower GI, Cat Scan, Ultra Sound, and blood work. Nothing unusual showed (we were told) so all he did was take Greg off the AD.

In February 2003, I was out of town on business when I received a panicked call from Greg telling me that he was having strange episodes of his vision tunneling in, and felt on the verge of fainting. He said he couldn't drive like this or he'd kill himself or somebody else. I implored him to go right back to the Doctor, so once again he made an appointment. At that time they said his WBC's were low, but that's it. I pushed for the reason and got no answer. This made me very suspicious so I called my insurance and switched Doctors. Greg then went for another round of bloodwork and we got the diagnosis in April - HCV!!!
Later after getting his records from the last doctor we found a liver panel which showed elevated AST and ALT's. Why his doctor didn't put this together is beyond me.

A biopsy revealed stage 3... Greg is 1B, had a VL 9,230,000. Started treatment in June, and has been undetectable since first PCR 3 weeks after starting Pegasys.

I get really angry when I think that 5 years was wasted on a misdiagnosis. Now that his liver is functioning properly, he has no stomache problems, no diarrhea. His confusion however stemmed from high ammonia levels, which even now he is still plagued with. His new Doc thinks that this may be permanent, however it is controlled by Lactulose.

Sadly, had any of his previous Doctors really listened to him, we may have caught this early enough to have prevented much of the later damage done to his liver.

Greg has likely been infected since the early 70's, he was an IV drug user, however he also cut off his thumb and index finger around that time and did receive blood, so we're not really sure, though it's irrelevant in my mind.

Anyway, I found all of you I think around August and I can't tell you what this place has meant to me. I think one of my first times here was when Indiana was talking about the Rash in the South Forty and it really made me laugh, something I hadn't done much of in months. So everyone, even though I'm mad as hell, you have all given me something to hold onto, hope.

Thanks from the depths of my soul...

Debbe

[Ivy0130]

Suezeeque. I knw this post is old but my mother displayed the same symptoms. Couldn't swallow or digest food, became very depressed, itched a lot, and ast levels were elevated as well as dehydrated. She was misdiagnosed with IBS & still is b/c it is until now I've done research as I'm experiencing the very same symptoms that my mother and I have contracted hepatitis. Ive been tested but the results aren't in. My mother hasn't. But I'm more than certain we both have it. I'm very afraid b/c I'm hoping my children haven't gotten it. I know there isn't a cure but treatable, I just feel hopeless and hurt for having exposed them as my mother exposed me.

[can-do-man]

You have had at least 2 PCR's, sorry but they don't lie. So there is no way to misdiagnosed that, as stated by both Pooh and hrspwrguy, Viral loads fluctuate daily........Best to you

[heart_in_the_keyes]

Yes it is possible to misdiagnois ...I just saw my hep/gastro dr today who is head of the liver transplant for our area and I had my paperwork in hand and said I had just couldn't understand how I went from marginal Hep C and Stage 2 compensated liver to Hep C viral load of almost 3M and now I'm ESLD Stage 4 w/decompensated liver.  It just didn't make sense.  He said straight out that the hep./gastro dr I saw when he was out of the country gave me a misdiagnois..... Mistakes are made. That is why you have to be on top of this and be your own advocate and keep track of EVERYTHING....read and research.  Due to that mistake I am now facing a liver transplant.  Does anyone besides me think that associate who misdiagnoised me should pay the bill for this???? Ungodly amount of testings and every time I walk in the hospital I hear cha-ching.  

[pooh55811]

LOL!  : )

[hrsepwrguy]

Hey pooh, looks like I'm the slow typist today :)

[hrsepwrguy]

Welcome to the group, unfortunately you have not been misdiagnosed, if you have a viral load, you have hep c. Your viral load will fluctuate daily because your immune system is in a constant battle with the virus, some days it's up, some days it's down, mine went from 11.5 mill to 14.2 mill in 2 months before I treated

[pooh55811]

Welcome to the forum.

If you have a viral load, you have Hepatitis C.

Viral loads fluctuate daily. They do not stay the same.

In the future, if you have questions it is best to start a new thread (not tack on to an old thread). More people will see the new thread and respond to your question. To start a new thread, go towards the top of the page, click on the orange bar "Post a Question" and ask your question. People will respond.

[singlemom35]

Is it possible to be misdiagnosed with hep c? My viral count in the beginning was 265,000 it is now down to 45,000 with no treatment? Really confused

[flcyclist]

Hey guys, this thread is from 2004 if that matters.  Now you can see a cute little hourglass to indicate an old thread,  Nice new feature - or at least I didn't notice it before.  ;)

[suezeeque]

I was also diagnosed because of significant GI issues.  I was unable to swallow.  I could only eat once every other day.  I lost 30 lbs in a couple of months.  Hospitalized, CT scans, MRI, gastric emptying study, cortisone test, etc etc etc.

This went on for over a year before I was diagnosed with HCV.

I was in pain each and every day.  I recently saw an immunologist who diagnosed my rashes (I had rashes pre-treatment that were unbearable) as autoimmune.  I also have type 1 diabetes, another autoimmune disease that I've had for decades, probably developed shortly after I was infected with HCV.

There is no doubt in my mind that my autoimmune issues are directly related to HCV...  So I'm doing treatment now, hoping to stop any more for popping up in the future.

I can't undo the past but I can change the future.

[TimR33]

Last month ( August 2011) I was feeling very Ill I was running a fever feeling very tired and weak I went to the ER they told me I had Hepatitis but didn't say which kind. I later seen my Doctor he took blood and results were positive for hepatitis C.  It has left me very confused and scared. I don't use drugs. Never had a blood transfusion. My wife past away 8 years ago in an auto accident so I don't know if she had it. I have been with two people sexually since then. I spoke with both one said she has been tested and doesn't have it and the other says she doesn't have it. I wish I had the answer to how.I was just diagnosis few weeks ago I feel fine now. I am not sure what to expect in the future.

[PhilaGuy]

WillieB:  I'm so glad that this board has been helpful to you...it's been great for me, too.  I haven't started treatment yet, but it sure is comforting to know that all these great people (minus the wackos!) are here to share their experiences.  My doctor said "Be careful about going online!  You'll only hear the horror stories!"  I have, but I think those are important to hear too...to kind of steel yourself and be prepared for whatever.

Anyway, I didn't mean to place you in the wacko category!  It just hit me the wrong way.  Maybe it would have been better to say "my physician was incompetant" rather than assume why she got into/through med school.  Lots of people get into schools that use criteria any number of people may object to.  Do you think GW Bush would have gotten into Yale if his father and grandfather hadn't gone there?  ;-)

Sorry...no politics!  Let's stick to our HepC experiences!  Just wanted to say that I hope you continue to post!  :-)

[WillieB]

I feel that my post was "misdiagnosed".  In no way shape or form was it meant to be racial statement, in other words those were the facts.  I chose not to live my life caught up in the anger of what happened 23 years ago - THAT WAS THE MESSAGE.

Two of the last four years of my life have been spent on treatment.  In '99 I was on infergen monotherapy.  My family doctor found data showing it was only 10% effective.  The internist was less informed than my family doctor!  There is incompetence in the medical field.  It doesn't mean that because the internist was Italian that I hate Italians.  (I can see someone taking the last three words out of context and using it against me.)  

In conclusion, this forum has been so beneficial to me this last year.  It is from this forum that I knew that I did not want to be on the pegintron treatment and waited for the pegasys to be available in my area.  I was not afraid when I was put on procrit and neupogen because I learned about it here.  When I started seeing gray wooly spots in my eyes I knew it was a side effect thanks to this forum.  I will continue to read the forum but will not post again for fear of being linked with "the wackos".

[jg2001]

If it hadn't been for trying to increase my life insurance, I'm not sure if I would ever had been diagnosed with this.  My doctors were pretty much just keeping an eye on my emphysema (50% decreased capacity) and my underactive thyroid.  I was diagnosed with emphysema when I was 34, and I'm 41 now. I guess the symptoms are quite similar...fatigue, pain...all the stuff that I've been reading here.  So, I had no reason to suspect that I also had this.  Yeah, it is kinda surprising that they don't keep checking to make sure they haven't missed anything.  We know our bodies better than they do, and when something isn't "right", we know it.

[lackalustre]

i too was shuffled around in the medical field before diagnosis in 98.  i had mono twice.  and just a lot of chronic fatigue, infections, etc.. thru the years.   learned to take care of myself, watch stress, eat well, etc...    
     this months  feb '04 READER'S DIGEST  has an article called "10 DISEASES doctors MISS  on page 121.     hepatitis c is the first one listed.

[lackalustre]

i too was shuffled around in the medical field before diagnosis in 98.  i had mono twice.  and just a lot of chronic fatigue, infections, etc.. thru the years.   learned to take care of myself, watch stress, eat well, etc...    
     this months READER'S DIGEST

[Better Angels]

Thanks Phila, for post number one and post number two, 'nuff said..

Ringy, you've always been kind to me. I appreciate it.

For anyone else who reads my first post, don't despair as I am not "consumed" by anger. In fact, it has on many occasions "energized" me and I know that there are others who have encountered those same feelings. Greg seems to have found peace of mind with it all, and that's all that matters to me, but every once in a while I think, "but what if..."

Debbe

[ringading]

morning all....humm well, i understand the sheer frustration of it all...but i think we must rememeber that basically...WE are the pioneers with this disease, and sadly that may mean many of us will be mis-diagnosed and shuuffled around and around for a time, until this becomes far more known and understood.  hang in there debbe...sounds like your husband was lucky to #1, have you as an advocate and #2 have cleared so early.  i try not to think about any lasting effects this will have on me, cause i'm just so highly damn suggestable anyway....yikes...if i THINK theres going to be lingering effects after treatment....well...for me then there WILL be...so i try and just focus on now and my...upcoming 3 month blood work, to see if i am..oh....undectable!
JAMIE..no i am in canada, i did not go through anything like you describe for any kind of certification, i did study social work for a time at university but then got involved in activism in the late 80's and 90's for IDU,( and HIV) did alot of public speaking,wrote many abstracts for conferences' that i spoke at...worked front line outreach, ensuring IDU had a ton of new needles, to reduce sharing, writing etc as well as developed several programs for needle 'distribution' as oppossed to 'exchange' to help combat the HIV epidemic, used here and in the States. hope that helps to answer your question some.  
cheers
kimmy....okay, i'm off, i'll peek in tonight...have a great day all!

[PhilaGuy]

We've just gotten some civilty back to this board, so I would implore everyone  to ignore  the statements in the above post that can be considered offensive.....I'm doing my best to just let them go...

[WillieB]

You have to let this go.  The damage done in the last 5 years I would guess is minimal to the overall 20+ years that your husband has had HCV.  It is always so much easier to be mad at someone else than to focus on yourself and the future.  Don't dwell in the anger.  I know that you have to let this go because you have a long road ahead.  I just finished 48/48 shots this last Friday.  You cannot waste one bit of energy on what has happened and must concentrate on what is ahead.

I got HCV 23 years ago while having a C-section.  All I wanted was a baby and 21 years later found out I brought home another little present.  My doctor was a black female allowed into medical school as part of reverse discrimination practices.  Two years later I played tennis with one of her med school friends.  He told me later as we became friends how incompetant she was as a surgeon.  In other words if I had been in the hands of a more skilled surgeon maybe I wouldn't have needed those two pints of blood.  I had to let this go.  I was reminded of this part of my life when I read your post.  Instead replace those negative thoughts with thoughts of what can I learn from this.  There have been some beautiful posts lately about gaining an awareness of the gift of life as a result of having HCV.    

As a spouse you have a very big role to play over the next year.  You must ask yourself do I really want to devote any of the finite amount of energy I have in being angry.  All of your energy needs to be focused on keeping your family together.   The positive attitude must come from you because once treatment starts it is an emotional roller coaster ride for your husband.

[PhilaGuy]

What a story!  Greg sure is lucky to have you.  This is just one more example or being your own advocate, getting second opinions, accepting that doctors don't know everything (and some are, in fact, just stupid!).  I'm not yet on treatment, but just by not going to the GI I was referred to and finding a world-reknowned hepatologist made me feel good and in control.  I'm so glad to hear that Greg is doing better!  Try to focus on that and find a way to let go of the anger - there's nothing you can do about it now!  Best wishes to you both!