Please help. 19 y/o female: It all... - Living with Fatty...

Living with Fatty Liver and NASH

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Please help. 19 y/o female

Emmhartf profile image
16 Replies

It all started in December. At the time, I had no idea what was going on. I became seriously ill one day in my nursing class. I began to sweat profusely, shake, felt extremely faint. I had to walk outside to get cold arm and breathe or I knew I would pass out. It hit me like a brick wall. I went to the emergency room 5+ times and they kept telling me nothing was wrong with me. I didn’t find out until this April that I had contracted Hepatitis A - and was sick from that, and the pain I was experiencing during that time and to this date is due to a bad liver from said disease. Since then, I have not felt like my normal self. I use to run 5+ miles every night, so full of happiness and energy. Now I am sick everyday. Can’t run, don’t have interest in things I use to do. I experience abdominal pain, nausea, chest pain, dizziness, spaced out feeling/disoriented on a daily basis.

Just recently I began to experience severe neck and head pain. I went to Emergency room and doctors told me they didn’t see anything and the only thing left for them to do was a spinal tap, but said I didn’t need it as if it were viral or bacterial meningitis I would be more sick, and if it were viral there was nothing they could do for me. They took a flu swab and a strep swab and told me they were both negative. Feeling defeated I went home. Two days later I received a call saying that my strep test was in fact positive and to start a course on antibiotics. I am currently on them now but still have the severe neck and head pain, along with the disoriented/ faint feeling. Like I’m going to freak out. I know the pain and symptoms are there but I can’t help but think that maybe they are missing something or aren’t taking me serious like last time.

Anyone had strep with no sore throat just neck and head pain?

Please help me I’m sorry that this is so long. Thank you so much xxx

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Emmhartf
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16 Replies
nash2 profile image
nash2Partner

Hi Emma

Gosh, that is a bad time. No wonder you are afraid. Many of us have had terrifying experiences so we understand. We aren't doctors, of course, so we can't really advise you about your health in any meaningful way, but something to consider. You had Hep A which can cause serious problems for the liver and that can cause a lot of different symptoms. My advice is to get a diagnosis from a hepatologist. That is a liver specialist. Emergency rooms are really not equipped or trained to diagnose liver disease so a lot of liver patients are sent home from ER with no information multiple times. There aren't enough hepatologists and you may have to travel to find one but finding out what may be happening with your liver is an important first step given that you have had hepatitis. Combine that with a strep infection and it can really upset your apple cart. I don't know if this is helpful but many of us have been undiagnosed or misdiagnosed for years so it is at least a course of action you can consider. Good luck

Wayne

Emmhartf profile image
Emmhartf in reply tonash2

Thank you for replying so quickly!

I know that you can’t give medical advice, but I would love to have any info on this subject as I am clueless.

My doctor doesn’t think the hepatitis A could continue to make me this sick, but my pain in my abdomen is directly on top of my liver and my liver to this day shows a fatty build up. I did not have this prior to getting the hepatitis A. Is it possible to feel pain and sickness from a fatty liver?

nash2 profile image
nash2Partner in reply toEmmhartf

A lot of things can go wrong if the liver isn't functioning correctly. Primary care docs have mostly been taught that a fatty liver is benign. That is sort of true until it isn't. A problem with the liver is that once it becomes inflamed it can get into a kind of cycle where it keeps irritating itself and it can be hard to break the cycle, particularly if something else comes along. If you visit communities like this one very much you will see hundreds of stories of people whose doctors told them not to worry about their liver and then ended up with cirrhosis. Blood tests and most routine scans can't diagnose liver disease. I'll post a graphic from a survey of medical professional that might put it in context for you.

Emmhartf profile image
Emmhartf in reply tonash2

Thank you so much!! I did not know that!! I was told that this was in my head and that my body is more sensitive now so that’s why I’m having crippling pain... I didn’t think so. I have an appointment with a Gastroenterologist in a couple weeks. My dr refused to write me a script to see a hematologist. So now im hoping the gi dr will.

nash2 profile image
nash2Partner in reply toEmmhartf

That is a step forward, but just be aware that there are gastro docs who are similar to your primary. You would think they would be up on livers but they are really about bowels. I was personally given a disease-free diagnosis by a gastro even though I later learned I was in serious trouble and I'm not at all unique. Remember even the professionals can't agree among themselves. I see you wrote hematologist, that is a blood doctor. You want a hepatologist and you do have a right to a second opinion.

Best Wayne

nash2 profile image
nash2Partner in reply tonash2

If you want to dig into the subject you might start here on our website

fattyliverfoundation.org/wi...

Emmhartf profile image
Emmhartf in reply tonash2

Sorry my phone autocorrected to hematologist.

It’s strange cause I’ve had a lot of blood work done and they majority of my results came back either too low or too high but the dr said not to worry...

I feel like when a dr looks at me they think nothing can be wrong with me because of my age.. at least that’s what they say. Unfortunately I can’t see a hepatologist without a referral and my dr will not give me one

Teri1755 profile image
Teri1755

I'm sorry you are feeling so sick and still not getting the answers you need. I know from experience how discouraging and frustrating it can be.

I did have strep throat and that in itself can wear your body down and without antibiotics it'll only get worse.

I remember High fevers and head pain from the high fevers and feeling like I was swallowing glass bc my throat hurt so bad..

I'm wondering about mono .... Did they check you for that? I'm no doctor but my daughter had it before and I remember it took her a long time to get over and bounce back. Something to think about and if not maybe insist that they run test.

Sorry I couldn't be of more help to you. I hope you find the answers soon so you can get back to feeling like you.

Take care and best of luck to you....

Emmhartf profile image
Emmhartf in reply toTeri1755

Thank you so much for replying at all.

They did test me for mono but said it was negative. I honestly feel like I can’t trust the ERs after they told me nothing was wrong when I went in for my liver. (The CT scan showed a fatty build up and scarring) but they did not tell me this I went months thinking it was in my head and no one believed me.

Low grade fever for me, severe neck and head pain. No sore throat

Teri1755 profile image
Teri1755 in reply toEmmhartf

I think you need to get your family doctor to refer you to a Hepatologist. Those ER doctors don't know enough about liver disease.

Mine went undetected for years, they did all kinds of procedures thinking it was something besides my liver, even sending me to a cancer doctor.... knowing that my liver enzymes were elevated.

And bc mine went undetected for so long I'm not at stage 4 cirrhosis plus autoimmune hepatitis. I possibly had it for awhile and kept going to the ER where I hot no answers as well.

So I do feel your pain! Please get a referral for a liver specialist as soon as you can. There's only one you and you need to make yourself number one!!!

Please keep me posted....

Emmhartf profile image
Emmhartf in reply toTeri1755

My doctor referred me to a Gastroenterologist but said I do not need to see a hepatologist for a fatty liver. I have so much pain where my liver is all day everyday I cry 10x a day

Thank you. I am so sorry for what you have gone through. I couldn’t imagine but I know it isn’t easy. It just sucks because I feel like I’m dying so I have no choice but to go to ER

Teri1755 profile image
Teri1755

Yes I saw a gastroenterologist as well before my biopsy... So your in good hands now and will get the answers you need.

Hopefully they can get you in soon and get the ball rolling so you feel better. Write down all your questions and concerns when you go for your appointment, I also take someone with me, it can all be overwhelming and sometimes I forget half of what the doctor said!

And I know that pain can be unbearable and uncomfortable, especially since you have time watch taking anything that can do more damage to your liver.

Maybe trying to cut out red meat or fatty foods from your diet will give you some temporary relief. I know easier said then done, right. It all sucks and none of is fair. And I know it all is so overwhelming...

Thank you for the kind words I appreciate that... I'm ok right now. I take my meds and hopefully it all can be managed and not do more damage.

Stay strong

utep99 profile image
utep99

I had flu,Streep and cirrohsis at once had no clue Streep was there just a sore neck and a headache I counted as flu. Please see a ENT and a liver doctor just to make sure liver and thyroid is going ok. My thyroid is not functioning and they will not remove it due to low blood count with cirrohsis. Find out early what is going on. The life you can save might be your own if it is serious.

Emmhartf profile image
Emmhartf in reply toutep99

I looked into my results online and it showed the strain of strep I have is rare: strep G.

Any info on this? I’m worried

nettl1 profile image
nettl1

I’ve had Cirrhosis since 1916. It is scary. Mine started when I had Hepatitis C. I also kept going to doctors for years and they kept telling me nothing was wrong . Or I had a virus. I don’t know much about Hep A. But read up and learn all you can. I use webmd.com. The specialist have come a long way. Good luck to you. Don’t use salt, drink, smoke or take medications even Tylenol..

Hepatofat profile image
Hepatofat

Emma,

It sounds like you hit a rough patch a couple of years ago. Could you possibly let us all know how things turned out? It would be fantastic to hear that you finished nursing school and now work for a hematology practice. Like many of us you probably made some life-changing decisions. NAFLD doesn’t just go away overnight. Did you discover anything that might be of help to the rest of us?

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