1. < Autoimmune Diseases

Zero appetite, not getting adequate nutrition

Posted by LA @grokking, Mar 28, 2018

I have been "diagnosed" with a mystery AI polyneuropathy. It was thought primarily some kind of motor neuron disease, but then came awful sensory involvement, and what appears to be autonomic involvement as well, based on GI issues. The pain, bloating, nausea are bad enough, but I have not eaten normally for years now. I have less than no appetite. It is dead. Eating is always forced, never enjoyable, and difficult to undertake.(I used to love cooking and everything around healthful eating) I have been trying to eat an AI paleo diet per Terry Wahls, but it calls for massive amounts of veggies and animal protein, which I just can't get into me. I've tried to contact her directly but of course, no money, no information. I carry 30 pounds less than my pre-illness healthy, fit, muscular self. Now I'm skin draped over shrinking muscle. I don't know what to do or where to turn. My doc has offered nothing though I always mention my sinking weight. Obesity, that gets their attention. But overt malnutrition, not so much. Of course, I figure my disabling fatigue would be improved if I could eat. Has anyone ever had and/or resolved this struggle?

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 28, 2018

Hello @grokking -- Have you thought about getting a second opinion from another doctor? I found a Mayo Clinic page that seems to describe what may be going on. It describes inflammatory bowel disease:

-- https://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/symptoms-causes/syc-20353315

I'm not sure if it's a possibility for you but Mayo Clinic is very good at diagnosing hard to diagnose diseases and health problems. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here:

-- http://mayocl.in/1mtmR63

I'm tagging other members who are more familiar with digestive health problem and may be able to offer some suggestions. @kanaazpereira, @dawn_giacabazi, @kdubois, @kariulrich, @vdouglas do you have any suggestions for @grokking?

John

REPLY
2 replies
oldkarl | @oldkarl | Mar 28, 2018

Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein misfolding disease, and total loss of appetite is not at all unusual. Look it up on the Mayo search line. Weight loss in spite of strong efforts to eat a good diet is one of the symptoms of LCDD. Ask Dr. Martha Grogran or Dr. Rajkumar.

REPLY
6 replies
LA | @grokking | Mar 28, 2018
In reply to @johnbishop "Hello @grokking -- Have you thought about getting a second opinion from another doctor? I found..." + (show)
@johnbishop

Hello @grokking -- Have you thought about getting a second opinion from another doctor? I found a Mayo Clinic page that seems to describe what may be going on. It describes inflammatory bowel disease:

-- https://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/symptoms-causes/syc-20353315

I'm not sure if it's a possibility for you but Mayo Clinic is very good at diagnosing hard to diagnose diseases and health problems. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here:

-- http://mayocl.in/1mtmR63

I'm tagging other members who are more familiar with digestive health problem and may be able to offer some suggestions. @kanaazpereira, @dawn_giacabazi, @kdubois, @kariulrich, @vdouglas do you have any suggestions for @grokking?

John

Jump to this post

Thanks, John. I've had hundreds of labs, nerve conduction studies/EMGs repeatedly, and nerve biopsy, PET, MRIs, CAT scans, and the polyneuropathy types are well documented (well, at least the sensorimotor part).. This is definitely not bowel related (other than my microbiome), rather, more upper gut, nausea, pain, etc. It is pretty classic for autonomic stuff. But I can't eat and it's destroying me. I am poor now, can't afford travel or more doctors. Just hoping one person might have a solution. You are so kind to respond.

REPLY
LA | @grokking | Mar 28, 2018
In reply to @oldkarl "Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein..." + (show)
@oldkarl

Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein misfolding disease, and total loss of appetite is not at all unusual. Look it up on the Mayo search line. Weight loss in spite of strong efforts to eat a good diet is one of the symptoms of LCDD. Ask Dr. Martha Grogran or Dr. Rajkumar.

Jump to this post

Thank you, Oldkarl! I appreciate the input. I will take a look at amyloidsis again, but I am most interested in figuring out a way to get better nutrition into me. Hope you are good.

REPLY
martingraham37 | @martingraham37 | Mar 28, 2018
In reply to @johnbishop "Hello @grokking -- Have you thought about getting a second opinion from another doctor? I found..." + (show)
@johnbishop

Hello @grokking -- Have you thought about getting a second opinion from another doctor? I found a Mayo Clinic page that seems to describe what may be going on. It describes inflammatory bowel disease:

-- https://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/symptoms-causes/syc-20353315

I'm not sure if it's a possibility for you but Mayo Clinic is very good at diagnosing hard to diagnose diseases and health problems. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here:

-- http://mayocl.in/1mtmR63

I'm tagging other members who are more familiar with digestive health problem and may be able to offer some suggestions. @kanaazpereira, @dawn_giacabazi, @kdubois, @kariulrich, @vdouglas do you have any suggestions for @grokking?

John

Jump to this post

Your problem with eating is not a good sign. I have crohns disease and the pain associated with it is painful. Your tests with imaging machines like PET have a few problems... they are good for detail on a certain level but struggle on multiple axis like 3 Dimension and growth areas. Try my facebook page ...

/martin.graham.5711

for tips and advice involving these issues.

Good luck
Martin Graham

REPLY
martingraham37 | @martingraham37 | Mar 28, 2018
In reply to @oldkarl "Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein..." + (show)
@oldkarl

Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein misfolding disease, and total loss of appetite is not at all unusual. Look it up on the Mayo search line. Weight loss in spite of strong efforts to eat a good diet is one of the symptoms of LCDD. Ask Dr. Martha Grogran or Dr. Rajkumar.

Jump to this post

Its important to know what youre eating... i.e what it looks like, even how you cut it, prepare it.

This is to get the most nutritional value out of it.

Try my Facebook page...

/martin. graham.5711

For advice.

Good luck
Martin Graham

REPLY
LA | @grokking | Mar 28, 2018
In reply to @oldkarl "Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein..." + (show)
@oldkarl

Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein misfolding disease, and total loss of appetite is not at all unusual. Look it up on the Mayo search line. Weight loss in spite of strong efforts to eat a good diet is one of the symptoms of LCDD. Ask Dr. Martha Grogran or Dr. Rajkumar.

Jump to this post

Thanks for your thoughtful response. I know, this is a bad thing not well understood, apparently. I am VERY careful of what I do eat, organic, no grains, beans, dairy, but getting it in me is dicey. I'm gonna go look at your page. Thanks!

REPLY
LA | @grokking | Mar 29, 2018
In reply to @oldkarl "Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein..." + (show)
@oldkarl

Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein misfolding disease, and total loss of appetite is not at all unusual. Look it up on the Mayo search line. Weight loss in spite of strong efforts to eat a good diet is one of the symptoms of LCDD. Ask Dr. Martha Grogran or Dr. Rajkumar.

Jump to this post

I could not locate you on FB. : - (

REPLY
martingraham37 | @martingraham37 | Mar 29, 2018
In reply to @oldkarl "Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein..." + (show)
@oldkarl

Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein misfolding disease, and total loss of appetite is not at all unusual. Look it up on the Mayo search line. Weight loss in spite of strong efforts to eat a good diet is one of the symptoms of LCDD. Ask Dr. Martha Grogran or Dr. Rajkumar.

Jump to this post

Hi try

/martin.graham.5811

For science tips and advice on my thesis 'The theory of Universality'

Good Luck
Martin Graham

REPLY
martingraham37 | @martingraham37 | Mar 29, 2018
In reply to @oldkarl "Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein..." + (show)
@oldkarl

Sounds to me like some form of Amyloid, perhaps Light Chain Deposit. It is a protein misfolding disease, and total loss of appetite is not at all unusual. Look it up on the Mayo search line. Weight loss in spite of strong efforts to eat a good diet is one of the symptoms of LCDD. Ask Dr. Martha Grogran or Dr. Rajkumar.

Jump to this post

I tend to do the same. Im interested in my thesis aboutvthe effects of everything about food preparation and its effects on metabalism. Ive posted my cirrect link to you sorry.

Martin Graham

REPLY
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