Appetite and eating

I am having a hard time with my eating and appetite. I cant even finish a small hamburger, I can eat about half and that’s it. I am doing OK at breakfast as I eat 2 eggs and toast with peanut butter and I dunk them, today I could not finish my second toast. I have no appetite and swallowing is a problem that causes me to have to cough it up and chew some more and drink cocoa to help with swallowing it. I had a feeding tube for 3 yrs and had it removed a few years ago so I may have to go back to the tube. My taste and smell seems to be going bad too. I do use cannabis at night to sleep but it wont help with the appetite. I am thinking of trying cannabis in the daytime to see if it will help. I tried to get an appointment with the doctor on a couple of my problems and got shot down for some reason. I have night sweats and also some sweating in the daytime and the doc told me in an E_mail to stop cannabis for a month and then contact him again and he will see me. He got to be crazy. I got refused treatment with botox to see if it would help my my neck spasms and twisting head and inability to talk right sometimes. No appointment for that. I tried to get a trial dosage of L-dopa and was told no because it was for parkinsons patients and I don’t have parkinsons just parkinsonism problems. The only thing I don’t have is the shakes. I am almost always using my wheelchair and am having a very hard time stating to walk, my hips are almost frozen and I am glued to the floor. I want in for a small cancer on my nose and ended up with 25 stitches and I am looking more like W.C. Fields almost. Jerry

Jerry, 25 stitches is a lot on one nose :flushed: W.C. Fields had heaps of personality :wink:

The difficulties you’re having really need to be discussed with a professional, if not a Neurologist, then a Speech Therapist for advice on swallowing. I’ve no experience of a feeding tube but I would say you definitely need to discuss this with someone.

If you feel you’re being ‘blocked’ in some way, it might be helpful to look on because there are links to help of all kinds, advocacy might be the way to go with this.


I agree with Beryl - I would check into the speech therapy and I would try to find a neurologist that will work with you. Sounds like the doctor you currently have doesn’t like you using cannabis. I would check into physical therapy too even though you are in a wc. They may be able to make that better

I had a doctors appt today about night sweats and was told it was caused by cannabis consumption. This is a brand new doctor I am seeing. I was also trying to see about neck spasms that are twisting my head off it seems and contorting my mouth and causing speech problems. I think the diagnosis of my neck is cervical dystonia, and it is starting to get painful at times he gave me a prescription for a muscle relaxant. He checked me with his stethoscope and pushed on my stomach for an examination and then ordered me a pneumonia shot. I hope I can feel like I can trust my doctor but we will see.

Dear Jerry

No GP will have the training or experience to deal with our type of problems. You need to be referred to a speech therapist about swallowing and speech, and a neurologist for the other symptoms. The GPs role can only be to refer. Let me know if you can get a proper referral.


What’s on your dinner plate;
video by Dana Mauro (National Ataxia Foundation member) via @YouTube

Got me a new doctor and a referral to an X-RAY next week. Got a new prescription for cervical neck twisting the other day, a muscle relaxant and ended up in emergency for about 10 hours, found it was gallstones hey said and took another pill the next day and the same thing happened, no more pills. I went yesterday to get my nose sandpapered for skin cancer operation and today I had a good bout of bleeding, I am on Coumadin and it don’t take much to start it. Jerry