weight loss with als

[cyberhart]

hi my name is steve i would like to thank the people who answered my inquirey on hand atrophy i do have another question that i hope would atract some replys if a person has got als do they loose body weight i got down to 69 kgs but have been able to put 6.5 kgs back on even though i am showing signs of atropy

[liz]

Hi Steve -

Someone with ALS might lose weight for several reasons - poor appetite from anxiety, loss of muscle mass, inability to eat due to bulbar problems. Likewise, someone with ALS might gain weight for several reasons - overeating from anxiety, increasingly sedentary lifestyle. There's probably some other reasons too that I'm not thinking of here. Could be another medical condition. Or maybe medication side effects. I think consulting with your physician is the best way to sort out your own situation.

Liz

[shannonme]

Count mom and me in the weight gain category! (stressed out caregivers gain weight, too) I can barely get my own big body up the stairs these days let alone help get her upstairs for her twice weekly shower. I'm going to have to get a hoyer lift for both of us! :) It's time to break open the lettuce bag I'm afraid.

[patricia1]

I went to my als clinic and I lost 15 pounds in two years about 6 pounds this last year They were all up in arms Giving me a diet I would have loved 10 years ago Icecream high fats, protein , hamburgers, fried foods, whip cream All the food I was told to stay away from I am having a ball Now Ill die of a heart attack from too much cholesterol :mrgreen: Pat

[CindyM]

I lost weight last summer and fall, from nausea. Nothing tasted good and I felt horrid all the time. then I solved that problem just in time for the holidays so now everything except my shoes is tight and won't fit properly. The shoes are loose. Now I find myself choosing easy to eat foods like oatmeal, soup, mashed potatoes, since my face gets tired. So we'll see how this new symptom affects my weight. I guess there could be a lot of reasons for losses and gains! Cindy

[quadbliss]

For those who are losing weight due to loss of appetite or nausea, I used medical marijuana to combat those symptoms for a couple years. (It is legal in my state, and I had a Doctor recommendation.) I used a vaporizer, so I was not inhaling smoke. I don't like to feel loopy during my productive hours. I only used it at night before bed. The hunger effect lingers for 24 hours. There are also a few beneficial side-effects. It was a better sleep medication than any of the pharmaceuticals I take now, it virtually eliminated my fasciculations, and it dries secretions. :-D

Mike

[tabney]

I have lost 40 pounds thus far due to nausea. I agree with Cindy that is seems to vary from person to person. Part of me is not complaining and the other part of me know I need to maintain my weight as much as possible. Hopefully will be able to get something for the nausea when I start clinic next week.

[Al]

From dx in Oct. 03 until now I lost 30 lb. I haven't lost any weight in about a year, Still eat well, veggies taters and meat. Some junk like ice cream yogurts amd pies but not a lot. Peanuts are still favourite snack and popcorn. Belly is still big as it ever was but has sagged due to loss of muscle to hold it up. In Canada we call it Molson muscle. In the US I think you call it BUD belly. LOL.
AL.

[ltr]

Does anyone know what exactly causes your nausea? Has a doctor ever explained this to anyone?

Al - it's sad we're known as the Bud bellies, I'd much rather be known as the Molson bellies (much better flavor instead of that carbonated water taste)! Leslie

[patricia1]

I never has nausea but maybe it from the excessive mucus.Pat

[vantec]

I was 181 pounds in May of 2006. In the month of June, I went on a diet. I felt perfectly fine on my Birthday (June 15), and got my drivers license renewed. I was 175 pounds on that day. In the next week, I started to feel weakness, and I knew something was wrong. I now weigh 132 pounds, so I lost 43 pounds. I eat as much as I can, but I have nausea too, and my stomach hurts. I've tried everything, medications, Ensure, ice cream, whipped cream, and other foods, but nothing helps. It really makes my days miserable. I wish I could try medical marijuana, but no doctor will prescribe it for me.

Conrad

[ltr]

Conrad- nice to hear from you! Didn't you have a recent appt? Let us know how things went. Leslie

[Mike27]

From dx in Oct. 03 until now I lost 30 lb. I haven't lost any weight in about a year, Still eat well, veggies taters and meat. Some junk like ice cream yogurts amd pies but not a lot. Peanuts are still favourite snack and popcorn. Belly is still big as it ever was but has sagged due to loss of muscle to hold it up. In Canada we call it Molson muscle. In the US I think you call it BUD belly. LOL.
AL.

I'm in the same boat Al!
Like I tell my wife, why would I need a 'six pack' when I've got a keg?

[JACKIEMAX]

hi everyone,

my husband weighed about 205 lbs when he was diagnosed this past january 07. he is down 17 lbs now. not due to nauseu, but he just has very little appetite. i have the same problem. i weighed 160 lbs. last summer, but i am unable to eat much either, so i am also down 17 lbs. as far as i am concerned, i needed to lose the weight, and i look and feel better, but horace certainly did not need to lose it. he looks sooooo thin and pale, it is just so disheartening.

jackiemax

[CindyM]

My theory on nausea is that we are operating on our last nerves/muscles. So that affects the body in many small and not-so-small ways. As muscles grow weaker in the chest and stomach, we get more indigestion, hiccups, and for some, nausea.

My problem was that I didn't recognize indigestion, so the sour stomach made me feel queasy. Being overtired makes me feel queasy too - as does over-eating. It takes me a day or longer to digest a big dinner. But I can control all of this with rest and OTC antacids. My doc implies that he was much more worried about whether or not I could still chew and swallow, and he felt the indigestion and slow digestion was just something I had to deal with, given our real concerns about my health. Cindy

[ltr]

Cindy - That's what kind of worries me. I haven't been diagnosed with a definite neuromuscular disease yet, but I have indigestion and nausea terrible. I sleep with my wastebasket at bedside! During the day I have that gaggy feeling. Anyway, I have the same idea as you about the nerves and muscles causing it, but who knows! Leslie

[vantec]

Hi Leslie,

Not so good. I had a NCV and EMG test at the Cleveland Clinic. The nurse did the NCV test, and the Neurologist did the EMG test. The Neurologist that did the EMG test, said it wasn't clean, so he had a second Neurologist do the EMG test again. He asked me where I was the weakest, and I told him my left leg. Then he asked me if I was injured? I told him no, that I had no injuries. He apologized that I was stuck with so many needles, and to have a good weekend, which is the last thing I am having. They did five blood tests too.

I called the doctor on Friday, and his secretary said that he wasn't in, and would call me on Monday. I'm making a list of things to ask him, so I don't forget when he calls me. If this Neurologist doesn't have an answer to my muscle weakness, difficulty in swallowing, weight loss, nasal sounding voice, stiff muscles, difficulty in breathing, cramps and muscle twitching, I don't know what I can do.

When the Neurologist tested me, I could not do heel and toe walking, or get up off the floor, without him pulling me up. I can just barely walk now.

Conrad

[CindyM]

Conrad- I'm really sorry to hear all this. I wish and hope there is some good explanation. Please don't spend the weekend alone. Are you planning on seeing friends or family? Now is the time to keep busy until you next see the Doctor. Sincerely, Cindy

[patricia1]

Conrad I dont know what school these neuros go to but they dont teach thembed side manners I wish I were there with you this weekend to help you get to monday.Iknow you are thinking the worse and you know we were all there. All I can say is call some friends over and keep busy and I will pray that you have the strenght and peace of mind this weekend.If you need to talk we are here. Pat

[ltr]

Conrad - I am glad you have your questions written down, that way you will get the answers you need. Hopefully you will find out what was wrong on your EMG and it won't point to als, but something else. I know you really want answers, but try to keep your spirits up as best you can. We are here for you and please keep us informed as you find, or don't find, answers. Leslie

[vantec]

Hi Cindy,

I sure hope there is a good explanation about all my symptoms too. Unfortunately, I am alone. I'm too weak to see any of my family and friends. I sure feel alone, except on this forum. It's a great place, with informative and supportive people. My computer is the only thing
that is keeping me busy right now.

Conrad

[vantec]

Hi Pat,

You can say that again, all the doctors I have seen have a terrible bed side manner. I wish you were here with me too. I just can't see how I can get any better, because I feel weaker and have more problems everyday. Like the last two nights, I slept only 3 to 4 hours. My brother should call today, that might help some. Do you think I could have some kind of autoimmune disease? I say that because a lot of my symptoms don't exact fit ALS. I'm losing a lot of hair, I'm in a lot of pain, and have trouble going to the bathroom (both number 1 and 2). It maybe because I am so dehydrated, and eating so little (food just doesn't taste good to me anymore, but my sense of smell has increased) and not exercising. This may be the worse day of my life.

Conrad

[vantec]

Hi Leslie,

I'm still adding questions to my list for tomorrow. I think one of the problems with these Neurologists, is you have to get tough with some of them, otherwise they will blame your problems on anxiety, or some other nonsense. I'm praying to God that it is not ALS. I will post what the doctor has to say tomorrow. Thanks to all that are here for me, and everyone else.

Conrad

[ltr]

Conrad - I, too, go through stages and have noticed my hair coming out. At one point it was everywhere. I do believe that this is a common symptom of autoimmune. The rheumatologist I see only thought of a couple of lab tests and that was it! Have you ever had a Smith test for lupus? It can cause many of the symptoms you describe, but as we all know there are dozens. Anyway, just a thought. Do you have a rheumo? Give it a try and make sure you get the blood test during a flare-up. Leslie

[BEVERLY PARRISH]

hi everyone,

my husband weighed about 205 lbs when he was diagnosed this past january 07. he is down 17 lbs now. not due to nauseu, but he just has very little appetite. i have the same problem. i weighed 160 lbs. last summer, but i am unable to eat much either, so i am also down 17 lbs. as far as i am concerned, i needed to lose the weight, and i look and feel better, but horace certainly did not need to lose it. he looks sooooo thin and pale, it is just so disheartening.

jackiemax
JACKIE,
WHEN WE LOOK GOOD WE FEEL GOOD, BUT LOSING WEIGHT ,IS A SIGN OF NOT BEING ABLE TO EAT, YOU WILL FEEL DEPRESSION, SADDNESS, ANGRER, ALL OF THESE THINGS I SEE FROM YOUR LETTERS BUT ,IT IS MORE CHEERFUL FOR YOU AND FOR HORACE TO TRY
AND SAY JOYFUL THINGS, SEE THE SUNSHINE, THE RAIN ,YOU ARE ALIVE, AND BLESSED AS THIS BURDEN YOU BOTH ARE GOING THROUGH BRINGS YOU AND HORACE CLOSER, I HURT FOR YOU AND HIM AND HE HURTS FOR YOU, BUT BEING A CARETAKER, IS A HARD JOB, HARD TO SMILE AND BE UP BUT SO IMPORTANT TO TRY ,LIFT OUR HEARTS TO
ENJOY THE SUN AND THE BLESSINGS, GOD HAS A PLAN FOR YOU MLY BEVE

[vantec]

Hi Leslie,

My Neurologist didn't call today! So, I called his secretary, and told her how important it was to get my results, and once again, she said the doctor would call me. I'm so mad at the Cleveland Clinic and their Neurologists. I doubt he will call me today. I'm at a loss at what I can do.

Conrad

[liz]

While I had good luck finding decent neurologists, I've never seen a breed quite like the people who staff their offices. They do not appear to have the slightest empathy for the distress patients are experiencing and nothing seems urgent to them. They're tougher to deal with than the workers at the DMV. All they really seem to care about is whether you've filled out their forms correctly and paid your co-pay before you leave the office. I've often wondered if they, and the doctors they work for, realize just how much they add to our anxiety because of the way they treat us. :mad:

Liz

[MtPockets]

I agree completely Liz. I have one of my doctors who is my pain management doc, who has a new staff every time I go into his office. Since hurricane Katrina it is hard to find good office staff and to retain them.

It sure gets tiring answering the same old questions every time you go see a doctor. You would think after seeing him for over 3 years you would not have to fill out the stupid questioner every time you come into the office. I think they must go back and pull my file and say OH we already have all that and throw it in the garbage.
Bummer isn't it?

God Bless
Capt AL

[patricia1]

They say no news is good news,but I know you are anxious to get a answer either way. I heard als doctors heve to detatch theyselves to their patients because they never have good outcomes or anything good to tell a patient and they see aweful outcomes .I guess thats their defense systems Pat

[CindyM]

Conrad. We are here for you. I wish you had family or friends that are closer. And wish you had a Doctor who would return phone calls. Please check in with us otmorrow and let us know if hter are any new developments. Cindy

[MtPockets]

Hi Leslie,

My Neurologist didn't call today! So, I called his secretary, and told her how important it was to get my results, and once again, she said the doctor would call me. I'm so mad at the Cleveland Clinic and their Neurologists. I doubt he will call me today. I'm at a loss at what I can do.

Conrad

I'm sorry you are having to go throught this alone Conrad. Please know that we are supporting you and are here for you.
God Bless
Capt AL

[ltr]

Hi Conrad - I know it is so frustrating. I have had days where I didn't want to go too far from the phone and then never received the call. Sometimes the docs seem so cold. But be patient, you never know what came up with them--maybe there was an emergency or he didn't get his messages, or maybe the doc knows your okay and isn't in a rush. Let's hope that is the case. Good luck. Leslie

[patricia1]

hi conrad You have to call the office and ask for the office manager be forceful Tell them you need a answer and you are not taking no for a answer.I worked in a doctors office for 30 years and alot of the time the doctor doesnt get the message. Good Luck Pat

[vantec]

Hi Capt AL,

This forum and people like you are my only support right now. I can't tell you how important that is to me.

God Bless
Conrad

[vantec]

Hi Leslie,

I called twice yesterday, and told the secretary how important it was that the doctor call me. To my surprise, he called around 5:00pm. He said that my EMG showed an abnormality, but that he could not dx me with ALS yet, and told me to come back in three months. Then I told him about my breathing problems, and he said that I should set up an appointment for a pulmonary function test. I'm going to do that today. When I lay in bed, it is difficult to breath, and I can't take deep breaths anymore. I sure hope I don't have Bulbar ALS.

Conrad

[vantec]

Hi Pat,

You're right, being forceful on my second call, I'm sure, is the reason the doctor called me. I can't understand why they treat people that can or do have life threatening diseases so poorly.

Conrad

[Al]

Hi Conrad. When I lay flat I can't breathe either. I've been using a Bipap for 2 years and no bulbar symptoms. You're over thinking these symptoms way too much.
AL.

[CindyM]

So did you get an appointment for a opulmonary function test, Conrad? Cindy

[JACKIEMAX]

hello conrad and so many others that have posted on this thread with conrad. first of all, i understand your anxiety. it took three neurologiets, three emg tests, a pulmonary specialist, an ent specialist, and finally an als specialist at vanderbilt als clinic in nashville, tn. before my husband was finally dx with als.

we lived in fear and anxiety for almost a year because these people would not give us a dx, and we had researched his symptoms on the internet a year ago and pretty much knew it was als. most of the doctors went out of their way to tell us it was a 'terminal disease with no treatment and no cure.' boy - we really needed to hear that one.....

and as far as the people in the office - you are all right about that one. they do not hae a clue what als is all about, and no one has bothered to educate them on it. if they knew what a monster this disease is, they might have some empathy for us. but, as one of you said, they just want those forms filled out correctly and their money.

we had so much fear and anxiety, especially me, the caretaker, that i thought i'd have a nervous breakdown before he was finally dx. now that we know what it is, most of the anxiety has turned into heartache. it breaks my heart to see him go through all this, not being able to even mow the yard, button his shirt, be intimate, and just downright lose all dignity in having to lean on others for the smallest things.

this forum is an absolute lifesaver for me, and i want you all to know how much you all mean to me.

hugs, jackiemax

[CindyM]

Hi Jackie-I can't decide which road is the harder to travel with this disease. It must be awful watching the one you love and even more anxiety-producing to be responsible for his care. But then again there's the poor PAL. THank goodness we all have each other! Cindy

[vantec]

Hi Cindy,

Yes, my appointment for the pulmonary test is on May 3rd, at 10:00am. I've never had one before, and I was wondering how it is done. Do they hook up a mask to your face, or do you just blow into a device?

Conrad

[quadbliss]

Hi jackiemax,

I wanted to share something with you and your husband that I have learned through years of living with this disease.

I am not my body. I am my presence or spirit. I am paralyzed from the neck down, need help with the most basic bodily functions, and can't speak. In spite of this, I have not lost one ounce of my dignity. No one can take that away from you. You have to surrender it. I have pride in who I have become, and exist with an ere of confidence.

Mike
http://mikebougher.com

[patricia1]

Hi Cindy,

Yes, my appointment for the pulmonary test is on May 3rd, at 10:00am. I've never had one before, and I was wondering how it is done. Do they hook up a mask to your face, or do you just blow into a device?

Conrad
Hi Conrad I had a mask because I have weakness around my lips But if you dont you take a deep breath and blow into a tube attached to the machine after you blow all the air into the tube you suck in while the tube is still in your mouth Then they make you do that three times an take the best reading of the three. Then you have to put the tube in you mouth and breath in and out quick breaths ,and thats the test They may do it while your lying down too good luck Pat

[JACKIEMAX]

after i read your post about still having your dignity, and my husband can still do so many more things than you, i felt ashamed that i wrote what i did about dignity. you are a true example to all of us, especially me, what dignity is all about.

God bless .

jackiemax

[ltr]

Jackiemax - please don't feel ashamed. Mike and others have taught me many things, which have made my life, with this unknown illness, much easier to bear. After all I have been through in my life, it took the members of this forum to make me realize that I can still love my life and all that I have. Some say that everything happens for a reason, maybe these are the reasons for all of us. Enjoy your day! Leslie

[quadbliss]

Hi Jackiemax,

I apologize for making you feel ashamed. That was not my intention. I was trying to help you see your predicament from another perspective. ;)

Mike

[JACKIEMAX]

quadbliss,
quadliss,
no need to apologize. i certainly know that you were not saying what you did about dignity for any other reason than,like you said, to share another perspective to handling this disease.

i have buried a father, mother, grandmother,2 aunts, two uncles, three first cousins, and a husband, yet i have never experienced anything like this horrible disease. i wake up every morning and the first thing i do or even think is 'thank you lord for giving us another day. just show me how to serve you today.' i am so grateful that the lord gave me this wonderful man whom i have been married to for the past six years to love and to be loved by. and when this disease hit him, i promised myself that i would not ask God 'why', but i have since then asked God 'why' several times. i don't know what God's purpose is, but i do know there is one, and i thank all of you for reaching out to not only me, but to each other. together we will help each other.

God bless.

jackiemax

[CindyM]

Wonderful attitude, Jackie. It takes as much effort to be grateful as it does to feel resentment, and feeling grateful makes both us and everyone around us feel better! Cindy