I have to stop all cannibal drugs, they won't put me on the transplant list so I have to quit smoking. I can understand not telling people. I doubt I would tell them if it turns out I do. I do not think I do though but I experienced this when I first got sick. Everyone abandoned me, everyone including my wife. I had no one left, it was big shock to me but I understand it now. Doesn't make it easier but now I know I will die alone. I have no illusions left about that. I do think I'm a long way off from death but we never know really that for sure. When you need people the most they run away, this has been my experience at every turn.

@JesseBoren I take high THC cannabis oil.Smoking "weed" won't cure anything. You can buy it in states where cannabis is legal, or everyone knows someone who has a friend. It's your life. If people dump you, find new friends..there are many support groups, community groups, etc both online and in real time.

@birdingnut I don't smoke to cure anything, just helps with pain and stress. I know all about CBD oil and I have tried it. It did nothing for me. I'm still pretty skeptical about it despite a lot of people I know that swear it helps them. The placebo effect is powerful I know so I will have to see the research before I fully buy into it. I expect it might really benefit some but I just haven't seen any data that convinces me yet.

@JesseBoren CBD oil is made from hemp and has little to NO THC. It doesn't claim to cure cancer, although it cures many other things. I take high THC cannabis oil, which does cure cancer.

@birdingnut good luck, hope it cures you

@JesseBoren Thanks!

They are doing a CT scan and a lot of blood work

@JesseBoren Let me know lovie.

ok, you asked for them, got the results back from my ct scan. It looks like she was wrong based on this test. My liver shows no signs of cancer, in fact, it has improved since 2016. They can no longer see any fatty liver, it seems to have resolved itself. All other organs look fine so it looks like my liver has repaired itself and all is well. Doesn't necessarily mean there is no cirrhosis since I haven't gotten that test back yet. If not I'm back to wondering where these weird symptoms are coming from. None of this changes the fact I have an unknown neurological disorder they can't diagnose. I thought all these except one were from the disorder so I was surprised when she said they were from cirrhosis. It will August before I go back to find out the results from the ultrasound but I would almost bet that it has improved also.

Thanks, I've been thinking of trying to apply to the NIH rare undiagnosed illness centers they now have. It's such a long process is the only reason I haven't tried. My liver doctor is one of the best in the country, I totally trust her. I can't say the same for most of the doctors I've seen. I do my research now myself. I learned I have to be involved, I can't just trust they will do what's right. My liver doctor is one of the few I totally trust knows more than I do. I'm regularly educating my family doctor about my issues. She pretty much lets me call the shots as far as testing. If I say I want a test done she dies it. I do respect all of them and their knowledge but not all of them are the sharpest tool on the shed. They tend to be poor about keeping up with the research coming out.

I actually gained some weight after my visit so, in reality, I've lost about 60 lbs now. I lost most during physical therapy on my lower back, about 40 lbs. I just kept working out afterward so I kept losing a bit more but it has pretty much stabilized at 160lbs, If I continue to drop weight and go under 150 lbs I will start to worry.

@JesseBoren Hey cause and effect? It makes sense and people would notice.

Sounds like it was an improvement. And if you keep losing they should check your thyroid for sure - I had a cousin who got very gaunt from Graves Disease - he was eating large amounts and could keep not wait on because his thyroid was working overtime.

There's a reason Doctors ask about our appetites and exercise level every single time we have a physical.

@RavenCT I expected her to freak on it really, to her it was a massive change. The doctor I see every month never thought it was that big of a deal because they saw me regularly. I do not eat well since I moved out by myself so I have another reason. Depression makes me not want to eat at all, I have to force myself to eat most of the time.

@JesseBoren When I was at my very worst not eating - I added protein powder to things. I had problems after Radiation with nausea for a long time.

I could get Chocolate protein powder down and it helped keep muscle tone etc.. It's probably not the best diet? But it did the trick when I couldn't face cooking. And I ate fruit and veggies because I knew i had to - to heal.

@RavenCT plantfusion has a really good protein drink I use a lot

I'm not afraid of being dead at all, it's the getting there I fear. I've had a tiny view of the horrors the body can be in and still live. There are states of being alive that terrify me so much I have a massive urge to end it now just to make sure it never happens.

@JesseBoren I've told all my children that if any of my illnesses become chronic I will end it. No quality of life is no life at all.

@kiramea I've been chronically ill for about 20 years now. I have had brief periods where I thought of ending it because the pain so great there was no joy left. These are very rare though, most of the time I can still enjoy life. My kids are probably the reason I'm still around. Nothing else really matters to me anymore. I can endure a great amount of suffering for them. I still enjoy my work and still dream of meeting someone at times. As long as I have any hope like that left I will keep fighting, it's hard to keep trying when you feel so defeated by life. I guess I still have a little left somewhere inside or I wouldn't be around any longer. I'm not sure I really want another relationship or I just want the feeling of wanting to live to come back honestly.

Thanks, I haven't drunk much alcohol in the last 20 years. I don't really know when I stopped as it wasn't really something I set out to do, just lost the desire I guess. It's not clear what's really driving it now but my mother has it also and she rarely drank. Fatty liver is behind my mother's problems but I haven't had the obesity issues she has had.

@JesseBoren Fatty liver is behind my problems and nobody else in my family had it. I used to drink a lot and these days I have mostly lost the taste for it. My friend with the liver transplant was a mechanic who was around bad fumes most of his life. There are many causes to our health problems.