Status
Not open for further replies.

berardmr

Member
Joined
Aug 28, 2017
Messages
16
Reason
Learn about ALS
Country
US
State
Florida
City
Ft. Myers
Hello,

I am posting regarding my 62 year old husband, who is a newly-retired law enforcement officer.

About five months ago, Dale noticed that he was losing weight without trying. His caloric intake was high. The weight kept falling off and our Primary Care doctor became concerned and ordered a barrage of tests, to include several MRIs, including the brain, full spine, upper and lower torso with dye (some of these may have been CT scans). She ordered a slew of blood tests and my husband had a colonoscopy and endoscopy. Everything came back clean.

We were in the process of selling our home and retiring to Florida. We just arrived here about 6 weeks ago. A doctor from Johns Hopkins recommended a neurologist in our area and he ran some more blood tests and said he is also baffled as to a diagnosis. He is performing an EMG on my husband and then wants us to go to Mayo Clinic in Jacksonville.

In addition to a weight loss of 40+ pounds (from 249 to 208), my husbands has lost a good bit of strength in his arms, hands and legs. He is very unsteady when getting out of bed or up from a sofa and he's fallen several times during these attempts. He eats and walks slowly. I am heartbroken to see this happening to my husband and my worst fear is ALS.

I read the sticky note and now know that an EMG will be helpful in a diagnosis.

I am beside myself with worry and I barely can eat or sleep. I cry most of the day. Not knowing and waiting is the hardest part.

Do these symptoms sound like ALS? So many other medical explanations have been ruled out and, of course, I fear the worst.

Dale is my world. I appreciate any input from this forum.

Thank you,

Michelle
 
Has he had breathing tests? That kind of weight loss in ALS if he can swallow ok is usually from breathing issues so if he has had pfts or a sleep study that is important info.

Of course strength loss is concerning though with dramatic weight loss that might be part of it.

The EMG should be helpful. I hope it leads in another direction but I can understand your concern. This is not usual presentation but not completely impossible

Do keep us posted
 
I admit to being baffled as to how weight loss led you to ALS. later in the disease we lose weight due to atrophy but that isn't what your husband is experiencing.

Follow thru on the EMG, it's useful for more than ALS.
 
I'm so glad to have found this forum and I appreciate everyone's input.

I'm not sure what PFTS is, but a quick google tells me that is involves a lung test. How would that be related to unexplained weight loss?

Now that you mention it, he does have a fairly persistent, low and soft cough.

His voice is getting much softer too.

Thanks again.
 
It started with extreme weight loss and then led to falling and balance issues. He lost a lot of strength in his hands, arms and legs. He was then referred to a neurologist, who is baffled at this point.
 
Berardmr, the last line on your bio says "Interest" and you selected...

"I am interested in learning about ALS/MND".

Learning is always a good thing and some post here with just simple interest in ALS.
Sometimes we forget "I am interested in learning about ALS/MND" in our replies.

But... there is a not so good side. For many the more they read the more they begin to convince themselves they, or their loved one... has ALS. (Then anxiety amplifies other small symptoms often unrelated.) Many times even before an EMG has been performed. About the most definitive test for ALS.

As you wrote... the Neurologist is baffled, even being aware of his presented symptoms.

That is a good sign it is something else.

Hope for the best...
 
The connection between breathing and weight loss is that when the breathing muscles weaken, breathing becomes harder work and burns more calories. This is an extremely rare presentation so not very likely in any one case.
 
Your are so right. I have spent the last 5 days in a complete rut and on the internet endlessly. I wish I would have discovered this forum last week.

I have cried many tears while I learned more about ALS. It is a heartbreaking disease for everyone involved.

I realize I can't make much of a difference, but I will do something to contribute to finding a cure for ALS and raising awareness to anyone who will listen to me.

I send my prayers and my love to everyone who is dealing with it.

I will update with the results of my husband's EMG after Sept. 6th.

Michelle
 
One more thing, the doctor doesn't suspect ALS because he doesn't have trouble swallowing. I don't feel that I can put my full faith in that statement.
 
BERARDMR, couple things:
As all our experts have said, if this were to be ALS, it would be an unusual presentation. That's another way of saying, naw, doesn't seem like ALS.
In fact, I'm pretty sure you're looking at something very NON-ALS.
I agree with your doctor. I think your doctor has a better understanding of ALS than you do, even after 5 days of reading about it.

Let's look at what you've written:
Weight loss despite good caloric intake.
Soft voice, low and soft cough.
Balance issues, several falls when getting up.
Weak in all the extremities.
Neurologist is baffled (maybe it's not neurological, then)
Dr does not suspect ALS.

As Greg said, I don't see how those symptoms would lead you to ALS.
 
If you go to Mayo Clinic, make sure you are assigned a primary care doctor. They will coordinate all specialties and get the testing you need. When I was unable to digest fat in 1999, Mayo took the interdisciplinary approach and I ended up seeing 5 different specialties until they had it figured out.
 
What you describe sounds more like myopathy than anything else, Michelle (assuming CIDP has been ruled out). When is the EMG?

Any meds/medical issue before this started?
 
Hello,

My husband's EMG (and another nerve test NCV?) is scheduled for Wednesday, Sept. 6th. Meanwhile, the weight continues to drop at a concerning rate, even with a hefty caloric intake. He lost his balance twice this week and fell; luckily he's not had an injury thus far. His arms and legs are very weak and he's lost those big, broad shoulders.

I've read that we should be able to ask the neurologist for the results on the same day? I don't want to appear pushy to the doctor but if it's protocol, I will ask.

Dale can stand on his toes and his CK bloodtest was 28.

Thank you,

Michelle
 
If the EMG is done by the treating neurologist then you should get information right away and yes you can certainly ask if it is not forthcoming.

If it is a different person you can certainly still ask. It is both a protocol issue and the fact that if that person has not done the workup they may not feel able to give a diagnosis so you may not get a definitive answer. Don't read anything into it if they say sorry you need to get the result from your doctor but often if not a firm answer they will give a hint. Some are told then and there though. My sister was told flatly yes it is ALS by someone she had never seen before.

Good luck please let us know
 
I want to provide an update.

My husband's EMG, scheduled for tomorrow, has been cancelled. We were told that he's been accepted at the Mayo Clinic and he will have an EMG there, regardless of whether it was performed elsewhere.

Dr. Kevin Boylan will be his physician in Jacksonville. We are waiting for their call to schedule an appointment but I will call them tomorrow (and probably several times a week) until one is scheduled.

My husband is losing more weight with every passing day. Since April, he's lost 20% of his body weight, in spite of high caloric intake. He's quite weak and shaky and he's very prone to falling -- that's what worries me the most right now.

Four months ago, he was a big, strong man who could stand to love 10-15 pounds.

I just don't understand this sudden, drastic and unexpected weight loss and muscle weakness.
 
Status
Not open for further replies.
Back
Top