Could it be something else?

[Pmickelson1]

Two years ago I was diagnosed with fatty liver disease. I've had an ultrasound, fibroscan and mre of my abdomen. All tests have come back confirming that I have a fatty liver. I sought out help when I noticed the upper abdominal pain being constant. Also I have pain behind my right shoulder blade. Fast forward two years and I live with debilitating pain and fatigue. After having an abnormal emg and nerve conduction studies I was diagnosed with neuropathy and myopothy. In addition to the muscle cramping, upper quadrant pain, overall pain and general fatigue, I've suddenly started having a lot of tonsil stones. Does anyone know if any of these symptoms could be related to my liver? Particularly myopathy? Is that a symptom to expect from liver disease? Even after the tests I've had done, I truly feel like it is. I'm a year in to this mystery neuromuscular disease and I'm frustrated and looking everywhere for answers. Thanks in advance!

[Hidden]

Hello and welcome to this forum. Are you under the care of a liver specialist for your fatty liver diagnosis? It is important that you have the appropriate followup for your condition ie scans and blood tests at suitable intervals. It is possible to get some neurological issues in the presence of liver disease but it is also quite possible that it is unrelated. I hoep you get to the bottom of what is going on soon.

[Pmickelson1 in reply to Hidden]

Thank you for your quick response. I do not currently see a liver specialist since I haven't been referred to one. My primary care provider runs routine liver function, metabolic, hematology, etc tests every year. Everyone seems to think it is neuromuscular in nature so I see a neuromuscular specialist every 3 months. He has done numerous tests to rule in or out neuromuscular diseases such no luck so far. I definitely have something going on neuromuscularly but I really feel it's due to my liver although everything has come back fine with it.

[Rosebud1920 in reply to Pmickelson1]

On the Fatty Liver — what did your tests say as far as staging as to how bad. For example on the FibroScan what was your median Cap score and your median E (kPa) score . These are on mine at the top of the page above all the pictures. These correspond to a score for Fibrosis (F0/1-F4) and for how much of the liver is involved and grading Steatosis/fatty liver S1-3 - I think I have that right. You didn’t say if your fatty liver is due to overweight, diabetes, drugs, alcohol, viral issues, or any combination, etc. Fatty liver comes from something. If you have a copy of that FibroScan - you can go to Memorial Sloan Kettering to help understand the Fibroscan scores. mskcc.org/cancer-care/patie...

You didn’t mention if you have had a liver biopsy. If it were me, I would see a hepatologist. Make sure you give them a copy of all your reports and let them decide how often you need to be followed and if your primary care doc can do your basic tests and you only see the liver guy once a year etc. But fatty liver can certainly progress to Fibrosis and then finally to end stage cirrhosis, liver failure and liver cancer and needs to be watched and changes made to prevent this from happening. In the case of being diabetic, or also having heart disease, these things become much more important. I’m not sure your liver issue has anything to do with your shoulder pain - depends on how severe your liver disease is but could be a completely separate issue.

Does your insurance require a referral? If not, then just look up one in your area and make an appt. or you can just tell your doctor you want to be referred to someone he recommends. Liver specialists ( hepatologists) fall under the gastroenterologist field but have become more and more stand alone specialists but they are gastroenterologist first. So you may want to start there if you can’t find a dedicated hepatologist in your area.

In terms of your right shoulder pain — some folks with heart disease have right shoulder pain as opposed to left or both. Other options since your mention nerve issues can be rotator cuff issues, joint issues, overuse, frozen shoulder, even spine issue — anything put pressure on a nerve or nerves. It could be how your sleep or some repetitive motion you do every day. Many times we beat our bodies up with sports, etc and we pay for it later. You might want to see an orthopedic doctor to get that shoulder looked at if it hasn’t been done yet.

If an orthopedic doctor can’t determine any issue with the shoulder except “yes you have nerve pain” then seeing a rheumatologist for autoimmune issues contributing to the myopothy, muscle cramping, overall pain, fatigue, etc might be next. A rheumatologist can run a battery of tests to see if there is any autoimmune issues going on like rheumatoid arthritis, fibromyalgia and a host of other issues.

On the tonsil stones, I wish I know what causes them period but what causes them to wax and wane. Nobody else does either and the only recommendation most dentist or MDs will offer is better mouth hygiene ( brushing your teeth 3-4 times a day and absolutely before bed, flossing each day, using sonic tooth brushes, water piks, using 3% hydrogen peroxide and baking soda to brush with, gargling with specialty non alcohol gargles, having your teeth cleaned at least 2 times a year, more if possible, etc). Other suggestions will be to see if specific foods make a difference like dairy, or some other. Mine started when I started using a CPAP machine and I have to be extra vigilant on taking care of my mouth or they will pop up. It can be the tonsil structure in terms of deep pits that hold debris and bacteria. You can have your tonsils removed to take care of the issue especially if you get lots of sore throats, infections, etc. Here is a short piece from Mayo Clinic newsnetwork.mayoclinic.org/...

It sounds like you need to take control of your health and not wait for a doctor to refer you. Ask for a referral if you have to have one - if not do research on who others see and like. Some areas have “best doc” rankings each year that might help - these are docs that patients like and think are easy to work with and are good.

Hope all that helps. I know what it’s like to be in pain, I’m 66 and have been dealing with it since I was quite young and it’s not fun. Sometimes issues are simple and yet cause a lot of pain and sometimes they can’t be fixed.

[Pmickelson1 in reply to Rosebud1920]

Hi! I am not able to access my records for Fibroscan or MRE at the moment. I did however see an ultrasound of my liver with a kPa of 4.75 with a note that it is in range. The comment made by the radiologist was "there is fatty infiltration of the liver however the patient is not at high risk for clinically liver fibrosis".

I've been told by gastroenterology that my fatty liver is due to my diet and/or weight. I have no history of diabetes, kidney problems, drug use, or alcohol use.

I've seen a rheumatologist who did a ton of antibody panels. My neuromuscular specialist has done heavy metal tests, antibody tests, even mitochondrial tests. So far, nothing has come back abnormal or positive. I am to see him next month for a few more specialty tests to be done.

My pain management doctor ordered imaging of all of the areas of pain, but couldn't find anything significant.

Unfortunately, my insurance is awful and it is a constant battle to get approval for the necessary tests.

Thank you so much for the links you provided and the wealth of knowledge. I will definitely take your advice and take control of my health!!!!