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@grokking

Posts: 13
Joined: Nov 05, 2017

Zero appetite, not getting adequate nutrition

Posted by @grokking, Wed, Mar 28 4:20pm

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?

REPLY

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

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.

@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

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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.

@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.

@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

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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

@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

@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!

@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.

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I could not locate you on FB. : – (

@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

@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

@grokking LA Sorry to hear about what you have, but don't be too upset. Truth is, half or more of folks with AL show these signs and symptoms. Food doesn't taste good any longer, so we lose weight in spite of trying hard to put it on, I have just started this cycle. the stomach hunger nerves get interrupted, and a lot more. There is a lot of material on this, available from Mayo, NIH, Alnylam, Boston Amyloidosis Centers, Fred Hutchinson, and many more. I even have my own stuff at https://www.bit.Ly/1w7j4j8 "Amyloidosis". This disorder has lots of surprises for both docs and patients. My latest thing is pain in my leg bones and bleeding from everywhere– urine, anal, spit, nasal, etc. So with systemic AL of any sort, the big thing is to not let the surprises throw you. Heart, lungs, thyroid, brain, eyes, spleen, lymph, adrenals, toes, nails, corneas, etc. Anyway, one great book, although about 10 years old, and expensive, is Amyloidosis — Diagnosis and Treatment. Available from Bookstores, paper or e-book. Also, Cancer Net, or so many others. What has happened is that the Amyloids have invaded your nerve cells and taken away your hunger. I used to pray to experience that. No longer.

@oldkarl

@grokking LA Sorry to hear about what you have, but don't be too upset. Truth is, half or more of folks with AL show these signs and symptoms. Food doesn't taste good any longer, so we lose weight in spite of trying hard to put it on, I have just started this cycle. the stomach hunger nerves get interrupted, and a lot more. There is a lot of material on this, available from Mayo, NIH, Alnylam, Boston Amyloidosis Centers, Fred Hutchinson, and many more. I even have my own stuff at https://www.bit.Ly/1w7j4j8 "Amyloidosis". This disorder has lots of surprises for both docs and patients. My latest thing is pain in my leg bones and bleeding from everywhere– urine, anal, spit, nasal, etc. So with systemic AL of any sort, the big thing is to not let the surprises throw you. Heart, lungs, thyroid, brain, eyes, spleen, lymph, adrenals, toes, nails, corneas, etc. Anyway, one great book, although about 10 years old, and expensive, is Amyloidosis — Diagnosis and Treatment. Available from Bookstores, paper or e-book. Also, Cancer Net, or so many others. What has happened is that the Amyloids have invaded your nerve cells and taken away your hunger. I used to pray to experience that. No longer.

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@ dear Oldkarl my goodness you are so right. Here is another symptom to add: cysts on the sole of my right foot. Could it be AL? thjs is a new one or just not AL? and yes, i do feel inside my bones like i can feel the marrow as i try to smooth them by caressing the bones.. i try not to walk on the foot so the cysts will not open. and again, one must wait months before seeing the doctors because this is how they handle their business.p.s. (yes, i do have all the other symptoms if interested just ask. peach414144

@oldkarl

@grokking LA Sorry to hear about what you have, but don't be too upset. Truth is, half or more of folks with AL show these signs and symptoms. Food doesn't taste good any longer, so we lose weight in spite of trying hard to put it on, I have just started this cycle. the stomach hunger nerves get interrupted, and a lot more. There is a lot of material on this, available from Mayo, NIH, Alnylam, Boston Amyloidosis Centers, Fred Hutchinson, and many more. I even have my own stuff at https://www.bit.Ly/1w7j4j8 "Amyloidosis". This disorder has lots of surprises for both docs and patients. My latest thing is pain in my leg bones and bleeding from everywhere– urine, anal, spit, nasal, etc. So with systemic AL of any sort, the big thing is to not let the surprises throw you. Heart, lungs, thyroid, brain, eyes, spleen, lymph, adrenals, toes, nails, corneas, etc. Anyway, one great book, although about 10 years old, and expensive, is Amyloidosis — Diagnosis and Treatment. Available from Bookstores, paper or e-book. Also, Cancer Net, or so many others. What has happened is that the Amyloids have invaded your nerve cells and taken away your hunger. I used to pray to experience that. No longer.

Jump to this post

just found out my so called cysts are plantar fibroma cysts on the bottom of both of my feet. also there are more than one on both of the feet. read that this could be heredity. really do think amyloidosis could very well be an inheritable disease. so know all at the same time i am suffering from 2 bulging disks inn the lumbar area, a pinched nerve in the same area causing the nerve that goes down the leg, a problem with the knee miniscus all on the right side and now with the plantar fibroma cysts on both of the soles of my feet. boy could i use some help. i wonder does social security a and b cover for a person to help me? would anyone know.

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