I need words, Wayne, for the live spe... - Living with Fatty...

Living with Fatty Liver and NASH

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I need words, Wayne, for the live specialist

AllHis
AllHis

Dear Wayne,

Please help me. I can not believe how intimidating it has become to see a specialist! I feel like I have to collect evidence and bring it before the judge! No kidding!

I took your advice and asked to see a liver specialist. Remember, my only symptoms are right rib pain (feels like a tearing) and severe neck pain. (It reminds me of the same symptoms of my non-functioning gall bladder removed in 2003/ no stones ) Only this time, with the neck pain comes TMJ, loss of hearing (one ear, low tones,) eye pressure and chest pain/vibrations after I eat. Add insomnia because of my neck position, waking up to a pounding heart, or just plain sweating!

(Does anyone here have a tortuous sigmoid colon?)

Now, I believe I have scarring because of the Nexium use and the black pepper extract added to a turmeric supplement I was taking about the time I had hearing loss last year. The bile reflux is not usually seen, but may show up after gastric bypass surgery (which is not me.) So why do I have bile? And no, I won't take Nexium!

So, finally, after months of the run around, I have a referral for a second opinion with the best liver specialist at UC. (University of Cincinnati) Well... now I'm scared...

When I told my new primary care doctor I was wanting a liver biopsy, she literally held her hand in front of me, "Stop! Stop Right There!" & told me to stop that thinking & prescribed Zoloft.

Now that I have a referral... well...???

PS Referral not from my PCP, but from the kind GI doc who tried to find the reason for black stool

14 Replies
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nash2
nash2Administrator

Hi AllHis

It is easy to get lost in the forest of things that might be when you have multiple symptoms. A lot of things are hard to diagnose without the confusion. It is also important to remember that stress and chronic worry can have real physical effects and make it even more complicated. It is easy for doctors to fall back to some form of it is all in your head when answers are hard to get. It is also important to remember that it is easy for us to let stress fan the flames of whatever we are experiencing and Dr Google will drive you crazy with all the different opinions there. It is important to rule out things. Since you are going to see a hepatologist your goal is to find out if you have fibrosis or some other liver problem. The black stools suggest a bleed but that isn't necessarily caused by a liver problem. If it were me I'd ask about a Fibroscan as the quickest and easiest measure you can take for fibrosis and fatty liver. No test is perfect but that is a place to start. The muscle/skeletal pain is unlikely to be directly liver related but the right upper quadrant paid needs to be understood. Pain can be odd as it can be felt far away from where the actual problem is but it is usually made worse by worry and stress. The liver doc should be able to determine your liver health but is unlikely to be able to help much with tmj for example so look for pieces of the puzzle not a complete answer to your problems. Hope that is of some help

Wayne

AllHis
AllHis in reply to nash2

Just what I needed to hear. thank you.

So, I'll simply express to the liver Doctor my true concern of scaring. It has been my body's response in the past. (For example my appendex had imploded & is now covered in scar tissue.)

And ask him for his opinion of bile being in the stomach. My true concern was how the turmeric with black pepper extract and Nexium created some unintended side effects. I just don't feel like I've completely recovered.

I have found a wonderful psychiatrist who has patiently spent time with me, trying to sort out all my symptoms. He too, agrees that there are a couple of things going on. (...we'll address them as "puzzle pieces.")

Thank you.

"Puzzle pieces."

The psychiatrist is an internist too. Is this common?

And I should get a DNA test back next week that is new on the market. (Results were delayed a week...) The Mayo Clinic and Cincinnati Children's Hospital created GeneSight test. The technology analyzes my DNA and helps the doctor understand what medication might work best for my genetic makeup. I personally would love to know how much the liver effects this "DNA" sample. I have been struggling with prescriptions since my reactive gastropathy. Many weird side effects...

What's gotten me this far is my strong faith and trust in God. It's a journey. Let's see what tomorrow brings?

mauschen
mauschen in reply to AllHis

Hi AllHis,

I realise that your post was directed at Wayne however, some of the symptoms that you describe fit to symptoms I have experienced.

In the past, my appendix perforated and like you, I have scar tissue and also adhesions. This can cause pain and discomfort in a variety of locations .

Then you mentioned neck pain and reactive insomnia, for me this was a displaced spinal disc pinching a nerve. Lack of sleep can affect cardiac function but this is best checked out by a doctor. Luckily, you have an internist to look after your mental health and understand your physical signs and symptoms.

Like Wayne, it’s my opinion that you have several problems going on at the same time. If your local doctor and psychiatrist communicate, they should be able to put the pieces of the puzzle together by a process of elimination.

Sometimes it’s easier if you write your signs and symptoms out on a piece of paper and list all previous operations and current treatments.

Did you get counselling prior to the DNA test? This blue print could show up things you might not want to know.

Hope you find answers soon.

AllHis
AllHis in reply to mauschen

Thank you for reaching out to me. I do feel like it may be something in my neck...

I'm only 52 and I'm having a hell of a time being believed! I've heard, "you're too young for this." ( " this" meaning guessing it may be a disk!) and your liver tests are normal. The specialists are many now, and they even use that against me! " how many doctors are you seeing?!"

The saddest story is I was denied a liver Doctor, even after all the effort ( it took 2 months!) for a referral.

I saw a real gem of a gastrologist! At UC. The most bizarre appointment I've ever had!

I was given a history lesson on the state of our health care today and " what does your husband think of all this?" And " you don't understand how things work around here."

When I finally wised up and explained I was here for a second opinion ( something I thought he knew) he agreed to look at the other doctor's notes and I will return in 3 weeks. Oh, and was I mad when he stated he hadn't received anything from the doctor.

It was my reaction that sent him out of the room to look for them. He came back with an 1" thick stack of paper, and with a shake of his head refused any information in my hands, and commented on the amount of time he'll need to review...

In my heart of hearts I know I don't need SSRI medication, Viibryd. I focus daily on the liver diet, and and take the lowest dose of this Rx.

So, the DNA testing was only for antidepressants and the like. Perfect for me, and I agreed quickly. 1. It showed my folate was good. 2. It showed how poorly I matabolize all the opioids/ pain medicines. Something I've been saying all along! I CAN NOT STOMACH PAIN MEDS! A little goes a long way. Now, I have a report that validates that. I simply can not take many prescriptions.

So... Could I be on to something...ummmm...my liver is compromised? Maybe Nexium was working against me and not for me? And that herbal supplement was icing on the cake!

No worries. This new prescription, Viibryd, is sure to kill what liver I have left...

Oh, that's right, my liver tests are normal and I'm too young for this!

Thanks for this site, Wayne. It's my home until I feel better.

mauschen
mauschen in reply to AllHis

Hi,

You ask how many doctors I see, I see two specialists, an Endocrinolgist for hypothyroidism, diabetes, NAFLD/NASH and multiple autoimmune conditions. She is very good and works with me and not against me.

My pulmonologist looks after my asthma, restrictive lung disease, sleep disordered breathing, severe hypertension with hypertensive heart disease, including valve disease and diastolic insufficiency plus CHD. I am not proud of this shopping list of conditions, I am angry about my own contribution!

These doctors provide the lotions and potions needed to keep me alive and the rest is up to me. I always enjoyed walking but sometimes I am curtailed with my breathing. Nevertheless, I walk as much as I can and have attended cardiac gymnastics for the past 4 years. Exercise has made such a difference to all of my conditions. It didn’t happen overnight but I am now stable. I take 16 essential tablets per day (which are not good for my liver), 2 inhalers and have CPAP at night

Most of my illnesses are the result of a domino effect which don’t seem to be the case for you therefore, I suggest you deal with one group of symptoms at a time. A simple X-ray on your neck maybe is all that’s needed. It’s amazing what radiologists find nowadays. An MRT scan would be better but can be expensive.

If you have a slipped disc, a good Physio will sort you out. Try not to look for disease, if you have it, you will eventually find out.

Try not to get stressed, it can make symptoms worse and cause all sorts of signs and symptoms.

Good luck!

AllHis
AllHis in reply to mauschen

Thanks.

I really am patient. This neck pain hasn't gone away, and in fact has only gotten worse.

I had my initial visit with a TMD specialist end of January! Full circle, back for another evaluation. This time an MRI of the jaw and the TMJ "joints." Something is not right. Everything hurts. ( my neck, my jaw, my eye sight, my chewing...even swallowing at night.)

I hate that I have to "play games" and please the doctors by taking a prescription med for anxiety! I wouldn't have anxiety if we could work together and find the cause of pain.

One day at a time... But this is getting old fast.

I think what has happened is I have been in "wait for more symptoms" mode for years! Years!

And just when I want to relax in the evening, I get this vibration sensation in my chest. And when I want to sleep in bed, my neck position is challenging and my pulse sounds off in my left ear.

Hopefully someone soon will hear me.

mauschen
mauschen in reply to AllHis

If you stand relaxed; eyes closed with your arms by your sides, then slowly raise them out to the side, what happens? Do you feel tingling or vibration?

AllHis
AllHis in reply to mauschen

Hello Mauschen,

it appears you may be the one who I relate to most.

How have you been?

No one permitted me the liver specialist appointment. It was left to the decision of a GI specialist, and he stated no more testing. My diognosis being Irritable Bowel.

Let me ask this goup:

Anyone have heart "vibrations"? My pulse is fine, so I know it's some kind of "sensation." I can feel it in my chest, or throat, and sometimes my body.

Anyone with liver damage have hives or rash on throat after certain prescriptions?

Anyone with kink in coradid artery? Tortuous, I think it is called.

And lastly, anyone with pulse heard in their ear like a loud marching sound?

You have a lot of knowledge and some questions for all your sources. You and God will see this through.

Go to the specialist and if they spoon feed you, get stern if you have to, but tell them you want some solid answers and if they’re not able to truly help, then stop and ask them to write the next referral because you sure don’t want to waste their time, nor yours. Be proactive in your health. YOU know your body!! Remember, their just “practicing medicine “😀. I’m a bit cynical when it comes to the medical profession. There are some really great doctors and ones that truly do care! Then there are all the others 😞 I pray your long road ahead is blessed by God

🙏🏼☝️

So kind of you. Thank you for your prayers.

I just can't believe how much your mental health suffers when you know the physical health has been crying out for "help." I've been trying to convince myself it's just ANXIETY. My body tells me otherwise. I really do need more courageous boldness .It's not part of my personality. (Despite what you may read here, I'm really very polite with doctors.)

My faith and trust in God is what has gotten me this far. I trust in His path He has beautifully placed before me. He knows me. He loves me. If He wanted me healed now before later, it would have been so. I trust in His Ways. Always.

Amen! I completely understand how pain effects every facet of our lives. I have good days and really bad days. I only survive this through my savior 🙏🏼 and a strong support system. I'm 57 but feel 70. It's a tough road but we trudge on!

One puzzle piece solved.

I have the results of MRI of jaw joints. My left jaw is displaced. There's a good chance of putting it back in a two week window...

Oh, now, it took 6 weeks to see the specialist. And this was my return visit. The original visit was in Jan after about 6-8 week wait from December. My dentist was referring me. He saw were I had restricked movement and some pain.

The sad part is this sounds a lot like last June when I lost hearing in my right ear. The same was said there. A window of time could have saved my hearing, yet it took over a month to get into the specialist, and my physician & I had spent valuable time treating it as a sinus infection...

Hi All His

When i was 18 i was diagnosed as a type Iib fatty liver when i hzd my gallbladder removed. Chol 408 trigl 482. I wasnt fat maybe 10lbs overweight. Over the years i hzve had many health issues. I was diagnosed 2 years ago

With hemochromatosis. (Iron overload) and nafld. I have been treated hzving blood removed every 4 to 6 weeks. Came off of cholesterol meds dont think they were doing anything. The past 8 weeks off and on my toungue swells is red and hurts. Thought it was a side effect from meds turns out it is called hemochromatosis tongue.. i havent been told what stage my liver is at. Another call to the doctors coming up. The group has been a godsend and i am finding out more and more every visit. I go with a list of questions. Keep on keeping on

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