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Avatar universal

I do not know what to do...

I am almost  everyday sick. Though my recent ultrasound, ultrasound with doppler and blood work over last 6 months  are totally normal, I do not feel well and I always associate these health problems with advanced fibrosis or cirrhosis.
For example, these  are my recent symptoms:

1- pressure in ears and ringing ears
2-pain in face muscles and sometimes  in the regions of  face close to neck
3-irritated/sore  eyes
4-dizziness/vertigo
5-low grade fever
6-headache
7-feeling as if i have flu
8-fatigue
9-gas and bloating

I do not know what to do...
33 Responses
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Avatar universal
you are the best , u have say what i have been thinking!
Helpful - 0
317787 tn?1473358451
Hi there, I wanted to mention that after Lynn started her tx a study was done that showed that people who have cirrhosis and have failed tx in the past might "might" get better results by adding riba.
Lynn has done 4 treatments now.  When she did the Sovaldi/Olysio the recommendation was 12 weeks now for someone in her position it is 24.  Research for HCV is moving faster than one can keep up.  Or that may just be me :)
I am praying for Lynn that the Harvoni will be the one for her and that 2015 will be her year to be cured.
Take Care, Dee
Helpful - 0
10805050 tn?1420935520
Hi Lynn,

The Harvoni is a combination pill containing 90mg of Ledipasvic and 400mg of Sofosbuvir. As I understand it, one of the benefits of Harvoni was that you didn't have to add anything, like Ribavirin (as you do have to with  Sofosbuvir (Sovaldi). I couldn't really offer any type of advise on the issue. I just don't no too much about it since it's so new to the market. I do know they claim a 92-95% "cure" rate. That was enough to sell me.

Your team of medical professionals should be checking your viral count on a regular basis, and I think they could add Ribavirin middle course if you're not responding to the Harvoni.

I have an excellent Hepatologist (he's on the Liver Transplant team at UCSD). I follow his advice. Of course I do all my homework very thoroughly.

Please let me know what your doctor's input is. I'd love to know.

Wishing you the best.

Andy
Helpful - 0
317787 tn?1473358451
Really great to hear you are starting to tx.  I am happy for you.
Oh, I just had to use that amish cramp remedy I told you about.  It is advertised to work within two minutes. You take a cap full put it in two ounces of water and withing two minutes it is supposed to work.
I was having a foot cramp, it did work, really happy about that.
In an emergency you can just drink the cap full :)
Helpful - 0
683231 tn?1467323017
Great news on getting the Harvoni that is fantastic.

Yeah I have cirrhosis diagnosed 7 years ago. I am also on 24 weeks and trying to have Ribavirin added to get the most bang for my insurance companies buck.

If you want you could go to my support path harvoni from Gilead pharm. They provide a coupon for copayment so whatever your copayment is you will only have to pay 5 dollars. They just gave me a code I gave to my insurance no income questions asked.

Good luck on treatment
Lynn
Helpful - 0
10805050 tn?1420935520
Hi - Long time it's been. Hope All is well for you in this New Year,

The Scale I was referring to is the Ishak Modification of the Knodell HAI: Architectural Changes, Fibrosis and Cirrhosis. It measures the activity of Fibrotic development, Prior to the actual formation of fibrotic nodules encasing healthy liver cells,,,once the development Cirrhosis.

It's like the development of cancerous cells before they form a tumor. This activity is what initially brings on the signs and symptoms of a liver problem, as the Hundreds of processes of the liver start to deteriorate. Your liver enzymes rise, Bilirubin increases, RBC platelet counts go down, and we all know the rest.

It is based strictly on the cellular activity of the liver as it is deemed damaged or, finally Cirrhosis.  As I stated earlier, this is used by the Medical Profession (as well as Hospital Administrators and Insurance Companies) to determine level of care and necessary treatments, based on necessity, costs and likely results of possible treatment. Unfortunately, a large portion of level of care determination is based on dollars and cents.

Andy

ps. I have great news, I started Harvoni yesterday. I think it was you that asked why they were considering a 12 week course rather than a 24 week course. Well, you called it right They told mean based on the many severe, life threatening conditions I have suffered from my ESLD, the 24 week course was prudent. I picked up the first bottle of 28 Tablets, and the total cost was $32,131.00. FOR 28 PILLS!!! Thank God for good insurance!
Helpful - 0
Avatar universal
I've noted this extra stage as well that I think Andy is referring to in various research papers. I kinda gather it was in line with what Andy was also pointing out about the fibrosis progression/stages - once you reach "true" cirrhosis (architecture change), then there is no going back.

Some very advanced stages of fibrosis, with completed bridging around separate islands of hepatocytes, is still not actual cirrhosis. But some pathologists point out that this fine of a level in distinguishing stages may not be practical from the clinical point of view just due to simple sampling error possibilities - is this tiny sample truly representative of the whole liver?
Helpful - 0
683231 tn?1467323017
Hi Andy

I was wondering about that scale of five you mentioned as I have only ever seen scoring based on degree of inflammation and especially fibrosis
For example F0 no scarring F1 minimal scarring and in my case F4 cirrhosis. As I had several biopsies over the years going through F1, F2, F3 and my last biopsy in Jan 08 was F4 the lab report did say early cirrhosis but perhaps they had a history of my progression and felt I had just crossed that line.

Kinda doubt that after 7 years I would be considered early cirrhosis in anyone's book especially as I have had esophageal varicies banding done in 2012.

But anyway just wondering if you have something I could read about that five grading system? Is that maybe something the use in the transplant list area maybe that is why I haven't read anything about that. All I know is I am MELD 7 and Child Pugh "A" and not near sick enough to be on the list.

Best to to
Lynn
Helpful - 0
10805050 tn?1420935520
I'm glad you're feeling better Ralph. Congratulations on your sobriety and choice in life.

I agree, getting up and out and getting a little exercise makes he world of difference regardless of the type of illness (if physically capable). Further, and I preach this one all the time, a whole foods diet with minimal salt and fat can mean the world of difference as well. These steps aren't going to cure a serious illness but they can certainly lessen the effects, and ward of secondary conditions.

I do want the mention, not necessarily to you Ralph, but as a general comment:

There are a lot of misconceptions of Liver Disease classifications.  There are a lot of grading systems given to liver disease. In all my studies of the disease, I understand it to break down like this:

There is Liver Disease classification 1 thru 5 and then End Stage Liver Disease. End Stage Liver Disease simply put means the liver is Cirrhotic, forming scar tissue known as Fibrosis. There is further classification of Compensating and Decompensating for Cirrhosis/ESLD.

There is No classification of "A little or a Lot of Cirrhosis, or Early Cirrhosis." The Liver is either Cirrhotic or it's not. Once fibrosis of any amount has formed, it is, with current medical knowledge, a non-reversible condition. Liver Disease 1 thru 5 are reversible, as no Cirrhosis has occurred, All of these classifications are used by medical professionals to determine course and level of care. The MELD score is used for this purpose, and also for Organ Transplant Allocation.

I also hear "I.ve been waiting for a Liver on the Transplant list for years." If that's the case, there are many unfortunate patients in much more dire need. I am on the Transplant list...but I don't consider myself as "waiting for a liver". My MELD score has greatly improved, and I'm not sick enough at this point in time. I was waiting in March with a MELD of 24, Now I've cut that number by 70% by practicing what I preach. All that could change quickly and I could be right up there again. That's why I'm "on the list".  But most organs go to scores much higher than 24. I remain active on the list so that my qualifications and MELD scoring are always up to date in the system.

The MELD score is the single factor used by the National Organ Donor Allocation System to determine who is next for a Liver. Regardless of how long you may have been on the list, the highest MELD Scores nationally are going to receive the next organs. It is unfortunate, but there are so few organs and demand so much higher, that allocation is usually given to those with a life expectance of days.

I hope and pray for all of us with this tragic disease. It is my hope that the coming few years will bring new, effective safe drugs to the market that will actually reverse fibrosis, The research and animal trials going on right now are very promising. I want to keep the liver I have.

I wish everyone nothing but the vest in the coming New Year.

Andy
Helpful - 0
Avatar universal
Hi everyone, I appreciate all your responses.  But im not convinced it has all been anxiety with myself and Just_me both cases sound a little too familiar and we had reason to believe our livers maybe stressed.

I would also like to point out that im not a person who goes to the doctors all the time.  Infact it was this issue that made me go, I had my first blood test at 38 years old.  If I cut myself in work I would just tape it up, i played football with a broken ankle and scored 2 goals, im not someone who exaggerates health issues.  My anxiety has dropped since I started feeling physically better , in truth I think there was a serious issue and some anxiety at the same time.  Im starting to think it could be stomach/gut related.  Im aware that end stage disease would have show up on the tests i have had, i just started to think "what if its very early cirrhosis?"

In a way it may turn out to be a good thing that I found out how harmful alcohol can be, im never drinking again, my last drink was 08 July 2014 at 38 years old, hopefully my liver can now recover from any stress it may have been under.  wasnt a daily drinker but around 30-40 units a week is still too much.
Helpful - 0
10805050 tn?1420935520
A simple blood test for RA factor is useful in distinguishing Rheumatoid Arthritis or Sjogren Syndrome from other types of arthritis

Andy
Helpful - 0
683231 tn?1467323017
Here is a link to the Autoimmune Community they have had discussions about Sjogren maybe they can help you.

http://www.medhelp.org/forums/Autoimmune-Disorders-/show/174

Helpful - 0
Avatar universal
I can honestly relate to you Just-me and Ralph too as when I was younger tended to have anxiety issues.  Stress and anxiety can very often mimic disease.   If all medical causes of distress have been ruled out, perhaps emotional considerations should be explored.
My only hope is that you both can find a healthy and happy future.  
All my best
.....Kim
Helpful - 0
10805050 tn?1420935520
Dry Eyes and Mouth with joint pain are symptoms of sjogren.

But keep in mind that it typically, not always, but typically effects Women, Over 40, with Rheumatic disease - such as rheumatoid arthritis or lupus, or Accompanies a Serious Bacterial Infection or a Serious Virus (such as HIV+ or AIDS) all of which Decompensate the Autoimmune system.

I wish you the Best.
Andy
Helpful - 0
Avatar universal
i feel very good recently except  red eyes/pain and sometimes  feeling cold.
no fatigue anymore and gastroenterological symptoms are better now.
i am just worrying that i have sjogren: because i have sometimes pain in my wrists,  red eyes/pain and  dry lips. we will see.
Helpful - 0
683231 tn?1467323017
Hi Ralph

Seriously if your doctor can't find anything in the way of liver disease look elsewhere for your symptoms. Maybe you do have some sort of Hartford type issue. See a gastroenterologist for a good diagnosis and trust your doctor.

If you want get a second opinion from a different Gastro of an internal medicine specialist.

However I would like to add stress and anxiety can also cause a lot of Gastro type problems so I would say in concert with seeing a medical doctor you really need to see a counselor about you stress and worry problems that could be the only reason for you health problems.

Also if you truly do have something wrong with your health I cannot imagine how you would handle the news if just the IDEA of being sick causes you so much stress and fear. So even more reason to find a counselor or other mental health professional for help.

Worry does not empty tomorrow of its sorrow. It empties today of its strength.

Corrie Ten Boom
Helpful - 0
Avatar universal
Your information is brilliant Andy thanks for responding!

I seem to have had the same issue as Just_me !  

I am 39 and went out for a couple of nights during the summer. I was very ill after this, my stomach swelled (gastritis) and my small intestine,i started googling when i still felt like I had a raging hangover 3 weeks later.I came across cirrhosis and Alcoholic hepatitis etc, convinced I had cirrhosis i went to the doctors, had bloods and they were ok, UREA at the bottom end and billirubin at the top, but in range.  Doctors said i didn't have any permanent damage.  still felt like crap 10 weeks later, went for more bloods and by this time i was convinced I had 24hours to live a week at best, seriously i was nearly fainting with terror.  2ndset of bloods were fine, better than the first with everything in the middle of range, i just couldnt shake my cirrhosis sudden death fear so i paid for an ultrasound, all normal!  doctors thinking i need mental help,in all i discussed all the results with 4 different doctors.  I know perhaps I should trust them, but its very hard when I was still feeling like crap! It took 5 months to feel better but im still not 100% myself.  Just_mes story got me thinking,he was diagnosed with a fatty liver, so it got me worried about the liver and symptom connection, but also it could be bowel related i think,my bowels are still not quite right.

sorry if we are bothering you Andy, obviously you have had a terrifying ordeal and understand you getting annoyed with us. But seriously i was ill and just looking for answers, im still worried that even if i get better a couple  of years down the road I could have problems, I could break a leg of have an organ transplant and recover quicker than 5 months!  perhaps im over reacting and its a bad case of IBS?
Helpful - 0
10805050 tn?1420935520
I can't believe this, its daily strength (one word) dot org back slash c etc..
Helpful - 0
10805050 tn?1420935520
I don't know why it keeps going *****, but it's *************,org/
Helpful - 0
10805050 tn?1420935520
Sorry, that first site is;

http://www.*****************/c/Hypochondria/support-group

Best wishes,

Andy
Helpful - 0
10805050 tn?1420935520
Here are a few websites you can check out if interested. I didn't see a proper forum on this sight. Daily Strength posts like this site for support, and the rest are informational (education-portal.com is very well written).

Take it like they first gave AA to me. They said "read the first 64 pages of the big book, and if it sounds like you - keep coming back". Just Me, I believe in you and are confident you will lift some of the weight you carry on your shoulders.

http://www.*****************/c/Hypochondria/support-group

http://www.thehypochondriac.com/

http://education-portal.com/academy/lesson/hypochondriasis-disorder-treatment-symptoms-definition-causes.html

http://www.mayoclinic.org/diseases-conditions/hypochondria/basics/definition/con-20028314
Helpful - 0
10805050 tn?1420935520
I understand the underlying problem. I never considered it till I went to his page to try to find further information I may have missed in his condition and realized these repetitive questions were more likely than not attributed to Hypochondriasis.

I admit, at the time I was quite upset.  Having a little time has, of course settled my feelings. In understand it is a very debilitating serious illness. But, I must admit, my limited knowledge and experience of the condition renders me or my input useless, if not dangerous.

My best advise stands as given above; "the time has come when you have to decide and do whatever you can to find the answer and get yourself better. You can't just ask the same question over and over until you get the answer you've decided it should be. You have to find the truth. Only you can do that."

I don't understand what possible benefit he could gain by spending time gathering information (and very solid information from many members) on an inaccurate perception of conditions he believes exist, despite the absence of an actual medical condition.

Rather than protecting him from his true fear, the Hypochondriasis, I believe any help he could receive would from being convinced him that Hypochondriasis is his primary illness, and should seek help for it as diligently as he seeks help for perceived conditions.

I have to believe on a daily basis that I am an Alcoholic. End Stage Liver Disease and the slew of conditions that accompany it are merely symptoms of my Primary Condition...Alcoholism. It is the underlying cause of all of my current conditions. If I do not truly believe that fact with my every fiber of body, some day I may have felt well for a long period of time, and say "dam that cirrhosis sucked, I think I'll have a drink."

To deal with that Illness I go to AA, talk to my Therapist and seek guidance thru my Chosen Faith...those are currently the best, most proven venues to deal with Alcoholism. Not my Doctors. I seek help for my cirrhosis related  problem in this forum, but I don't come here to deal with my Alcoholism. It just isn't the proper venue.

There are resources, forums and psychiatric professionals who can greatly help him deal with and get a handle on his illness.,., they are the proper venues. The first step of any progression toward recovery is honesty and truthfully admitting to yourself you have the condition. Until that fact is accepted, there can be no change or self improvement.

Just Me, I apologize for my abrupt and inconsiderate action and reaction of last night. I am sorry this writing puts you in the third party, as if not there. I only did so as I was addressing and responding to Kim. I do, however, wish that you read this seriously. Addressing Hypochondriasis, in my humble opinion, would most likely dramatically improve your quality of life. And when I always say I wish you the best, I truly do. I would be filled with joy for you to find some of the answers you are looking for.

You understand I deal with Alcoholism, and I will confide in you that I am what is known as Dual-Diagnosed. I have suffered from Severe Bipolar I my entire adult life. But I seek the best professional help I can get for that illness as well. I just don't seek answers for it here...it's not the proper venue.  So I deal with the Malady of Alcoholism, the Stigma of Mental Illness, and the Medical Issues of End Stage Liver Disease. I have learned over the years I must address them all, in the best possible way. And, although they all must be dealt with, the answers are in completely different placing.

I hope and pray you too seek out the best possible solutions for any conditions you have. Please look deep inside, be brutally honest with yourself, and take the necessary steps forward. You will find many others carrying the same yoke. And they will help you. You are a very appealing person and people will always gravitate to you.

God Bless You Both...thank you for putting me in check.

Andy
Helpful - 0
Avatar universal
Andy, Just-me is not asking these questions maliciously or with ill intent.
He is a very bright man with anxiety issues and needs much reinforcement that he is not seriously ill.
I have also been trying to help him with why he feels so sick.  He understands that these are worries that can be unfounded, but needs reinforcement that all is OK.
Anxiety issues to many with health fears are as real as if they were so.
Perhaps we can help him to get help for his fears and self doubt.
I hope that you understand that none of this was meant to exploit or be
hurtful.  
.....Kim
Helpful - 0
10805050 tn?1420935520
Well, from now on I'm checking into everyone's activity before I pour my heart, my time and my sincere effort out to anyone... If I even ever come back to this site.  I am truly hurt.
Andy
Helpful - 0
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