weight loss with als

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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
 
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
 
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
 
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
 
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
 
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
 
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
 
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
 
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
 
stay up mentally for you and for Horace

JACKIEMAX said:
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
 
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
 
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
 
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
 
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
 
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
 
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