I'm looking forward to meeting some of you and – just maybe – getting closer to a diagnosis (I hope I've come to the right place). So, at the risk of sharing too much detail, here's my story (apologies for the long post).
First, a bit about me. I'm a 32 year-old male, 5' 7", 141 lbs. Likewise, I don't use any prescription or recreational drugs (except for alcohol) and have no pre-existing medical conditions (save for a case of shingles in 2016, which will be relevant later). Lastly, I work a desk job, am a vegetarian, I exercise two days a week, and practice sitting meditation for twenty minutes a day.
Back in July of 2019, I started experiencing mild discomfort in right side – beginning just to the right of the center of my chest, wrapping around my right floating ribs, and extending to (what I believe is) my T8 vertebrae. To be clear, the pain has never been debilitating – maybe a two on a scale of ten.
I initially thought was a gastrointestinal issue. Specifically, thanks to Dr. Google, I thought I had liver disease – especially because, at the time, I was a drinker. But since then, I've had the following tests and procedures:
1. Two normal blood tests (comprehensive metabolic panel and complete blood count) in July and November of 2019.
2. An “unremarkable” multi-planar ultrasound in October of 2019.
3. An “unremarkable” CT scan with contrast in November of 2019.
4. A normal upper endoscopy with biopsy (testing negative for helicobacter pylori bacteria) in December of 2019.
5. A normal HIDA scan in January of 2020.
6. And a negative MRI in January of 2020.
Likewise, since all this began several months ago, I've also made the following observations:
1. I kept a food log for three months and was unable to identify any triggers e.g. fatty foods, alcohol, etc.
2. The discomfort is particularly noticeable while sitting for long periods of time e.g. in the car, at the movies, during sitting mediation, etc.
3. Likewise, the pain intensifies if I'm frequently bending over during housework or lifting my 3 year-old daughter.
4. And the sensation gets worse in the evenings and can sometimes be described as a numb spot in the middle of my back (again, around my T8 vertebrae).
With all that history out of the way, here's where I am today. Both my family doctor and gastroenterologist are out of ideas. Likewise, my doctor of physical medicine noticed a few “incidental thoracic hemangiomas” during my MRI but says they are both common and harmless.
So, the leading theory is either postherpetic neuralgia (a result of shingles I had on my right side in 2016) or some other nerve-related cause. In fact, I was prescribed Gabapentin by my doctor of physical medicine for a few weeks to see if things improved – which they did. Currently, I'm taking 1200mg per day (300mg in the morning, 300mg in the afternoon, and 600mg in the evening).
So, my question for the community is, has anyone else had a similar experience. And, if so, how did you arrive at a diagnosis and what have you been doing to help manage the pain?
Thanks in advance!
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SecondArrow
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Yes, I think you're right – it is unlikely that my liver is the culprit. But, like so many other people in the British Liver Trust community, it can be hard to shake the idea. But, even in the worst case scenario, all I can do is take care of myself. There's no magic pill – otherwise, everyone'd be taking it.
I actually spoke with my gastroenterologist yesterday as it relates to my most recent HIDA scan and I brought up the idea of having a FibroScan performed. His immediate response was, “why?” He said that the scans or blood tests would have hinted at fatty liver by now – so, there's simply no need for a FibroScan.
Likewise, I agree, Dr. Google is very tricky. One the one hand, it gives us the immediate “results” we all want but, on the other hand, it can be very myopic, misleading, and panic-inducing – it's kind of like a drug, in its own way.
With that in mind, one of my big takeaways from this experience is befriend yourself and trust your physicians. In other words, take a sincere (not necessarily serious) approach to your health and foster a relationship with your doctor – they're there to help.
Thank you for your kind words and I hope you find what you're looking for.
You read so many tragic stories that you end up worrying like crazy.
I'm so lucky that my doctor actually listens to me. When I lived in the UK, they had seven minutes appointments for one problem at a time and I felt so ignored.
Here, I think I delay everyone else because i have spent like half an hour discussing things. But if you can't go home understanding and bring reassured, what's the point?
I'd push for a sonogram if you're really worried. I don't know how hard it is to get where you are,but here you get them straight away.
I hope you find an answer, I'll follow you to see how you get on.
Firstly, I understand that this may be off-topic. So, apologies to the Nero Support community.
Nonetheless, I actually did have an ultrasound (I believe that's synonymous with a sonogram) back in October. Following that scan, the doctor said that my “liver echotexture is normal.” So, to use your words, I can “rest assured that there is a lack of liver involvement.”
After reading your latest post in the British Liver Trust community, I would encourage you to follow through with the recommended sonogram as well.
I will say that, even after my ultrasound, I still had my doubts. A lot of people in the community will tell you that, based on their experience, the scan can miss liver disease. Again, comments like this will only fuel your anxiety. However, after doing some “research”, I found several medical journals expounding the effectiveness of ultrasound in detecting fatty liver. For example...
“The association of high-amplitude echoes returned from the liver in diffuse fatty infiltration has now become well recognized... Only two of 40 patients with normal liver biopsies had a brightly reflective echo pattern, but 12 of 20 patients with fatty infiltration showed this pattern. Of the patients with histologically moderate or severe fatty infiltration, nine out of ten had a brightly reflective echo pattern.”
In other words, the vast majority of people with fatty liver in the study showed up during the ultrasound. And that was from a 2016 British Institute of Radiology study.
I hope that helps or – at the very least – gives you something to talk to your doctor about.
Thank you so much! I need to get the ultrasound done. I'll set a date and get on with it.
It fuels my anxiety so much. I'm a real catastrophist.
Sorry for using German words, my brain is fried as English is not my first language and I'm learning German and I kind of feel I just don't speak any language properly anymore!
Hello- Im sorry you are having all of this trouble. Have you been evaluated by a neurologist that specializes in migraine? Ive had similar probs and have abdominal migraines that radiate like that. Im not and md and Im not diagnosing you but if you havent seen a neuro it might be worth it. Just a thought. I hope you feel better quickly!
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