Status
Not open for further replies.

perplexed

Active member
Joined
Nov 28, 2008
Messages
70
Country
CA
State
Quebec
City
Montreal
Hi everyone; I'm beyond worried. My husband, 62 years old, started having symptoms two months ago of swallowing difficulty, saliva and mucous production, and of course intense weight loss through inability to eat. He's experienced no muscle weakness, spasms, tremors and has had normal MRI. The first EMG was clean, the second I don't know as he didn't ask the doctor if she detected muscle weakness even if he didn't feel any. He has a muscle biopsy next week.

My questions are these: are there any other tests anyone knows of, and has anyone heard of bulbar ALS presenting with no muscle weakness whatsoever? We have a young child and like you all, I'm looking at adjusting to a possibly new reality.
Thank you,
ESB
 

planningguy

Senior member
Joined
Jun 5, 2008
Messages
556
Country
US
State
Wyoming
City
Sheridan
ESB,

We're rolling into the New Year celebrations, so you might not get many posts until Friday. People are usually really good about responding. Unfortunately I don't have a good answer for you (I do not have ALS), though we have a number of bulbar onset ALS posters who will likely chime in.

Happy New Year,

Robert
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
ESB,
Welcome to our big family, I'm sorry you had to come here, but hopefully, you'll find a lot of support here.

I'm not the expert at all, but I'll give you my 2 cents.
I was diagnosed 6/3/08 with bulbar onset ALS. My biggest difference in life is my speech. I talk like I've had one too many margaritas! My family tells me it's not bad-they are used to it by now. I started "slurring" about a yr ago.

As you may know, every ALS patient is unique. I personally haven't had any muscle weakness that I'm aware of. No falling, dropping things, inability to walk, drive, work, grocery shop, caulk baseboard, paint ceilings and walls. I do find I am more tired after doing some of those "events", but I really don't have any problem doing them.

I know it's only the tip of the iceberg, but please know you're not alone. Our youngest son is only 8, and I plan on being around a long time for him.
Holiday weekend, might be a little slow on here, but don't worry, you'll get a lot of responses,
take good care,
brenda
 

perplexed

Active member
Joined
Nov 28, 2008
Messages
70
Country
CA
State
Quebec
City
Montreal
thank you

Thank you everyone who responded so far. It helps me immensely, though I'm not sure why precisely except for not being completely alone.
ESB
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
You are not alone, ESB. We will try to help as much as we can. Meanwhile, many of your questions and concerns have likely been discussed - try a search from the tab at the top of this screen. There is a wealth of information around here and folks are really good about sharing.

One bit of advice does come to mind- you might want to have him seen at a neurological clinics associated with a major teaching hospital. They have the experience and equipment needed to locate some of the rarer (and often less threatening) diseases.
 

perplexed

Active member
Joined
Nov 28, 2008
Messages
70
Country
CA
State
Quebec
City
Montreal
reply to cindy

Thank you Cindy - I appreciate it all. He's being seen at the Montreal Neurological Institute, which is one of the major diagnostic centers in North America (I'm American but live up here and know that Americans actually come up here for care) - other one is Johns Hopkins. More appts next week so somehow we will get through this.
All the best to everyone.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
perplexed,

Sorry about your husband.

My husband started having difficulties with his speech and swallowing in 2005. It seems only the tongue muscle was affected at that time. No muscle weakness anywhere else. But, there were twitches in his left hand and arm about 6 months later. About 3 months after the twitching or fasciculations started, he could no longer put enough pressure on the stylus to work his Palm Pilot. That's when he went to the doc.

We also have a young child and he's taking everything in stride, although we've had a few things happen at school after my husband volunteered to help out on an art project. Kids can be so cruel! The school counselor handled the situation and she knows all about ALS, as her sister had it. So please make sure the school your child attends is aware of your husband's diagnosed.

Good luck my friend!
 

Phil M

Senior member
Joined
Dec 28, 2008
Messages
599
Reason
PALS
Diagnosis
5/2008
Country
US
State
Ga
City
Snellville
My speach, and swallowing problems started about a year and a half ago. I can tell my muscles aren't as buff as they used to be, but I am not not really hampered with weakness yet thank god! I have some muscle twitching mainly in my right bicept. One thing that was a dead give away for me was..When I stick my tounge out. It trembles.
 

perplexed

Active member
Joined
Nov 28, 2008
Messages
70
Country
CA
State
Quebec
City
Montreal
Hi Phil

Did you feel or just see your tongue tremble? Was it subtle like a tremor or more like a shake? I haven't read of that before. Thank you.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Phil ... you said When I stick my tongue out. It trembles.

That is almost universal in the human race. Almost everybody's tongue trembles when they stick it out.

The neuro examines your tongue when it is at rest at the bottom of your mouth. (That's why they use tiny flashlights.) Also, a tremble is not a twitch. But, on the other hand, I think what we commonly think of as "twitches" are not what you get in ALS. My tongue has tiny quiverings all over the surface. Also, I understand that other ALS patients may experience a "wave motion" of twitches across the tongue.

Hope that helps!
 

perplexed

Active member
Joined
Nov 28, 2008
Messages
70
Country
CA
State
Quebec
City
Montreal
Thanks, Beth

Beth, thank you - it's hard sometimes as experiencing symptoms and explaining them are clearly often subjective. Your input was useful.
E
 

Phil M

Senior member
Joined
Dec 28, 2008
Messages
599
Reason
PALS
Diagnosis
5/2008
Country
US
State
Ga
City
Snellville
Looks like a sack full of jumping beans.
 

perplexed

Active member
Joined
Nov 28, 2008
Messages
70
Country
CA
State
Quebec
City
Montreal
To Brenda

Hi Brenda (everyone actually),
How can you tell is someone's speech is slurring from their having a mouth full of mucous?
Thanks so much,
E (perplexed in Montreal)
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
hey there E,
I don't know if I would call it a slurring of speech, as much as more deliberation. At least that's how it was for me about a year ago. I knew what I wanted to say, just had to spend more time forming the words maybe. Does that make any sense?
I didn't really have a mucous problem until recently, don't know if it's just sinus drainage, and I don't have a good cough reflex to cough it out, or if it's ALS doing something.

What I do know though-I spent 3 days in Nashville with some girls I work with, had a blast, stayed up til 1am both nights, enjoyed some very good rum and coke drinks, ate everything that didn't eat me first, spent 9 hrs at the big mall, walking around shopping and looking. Then we went to the Opryland hotel and walked for another 3 hrs looking at the decorations!

So, yeah, I have mucous, but I rarely get choked on it. Sometimes if I eat too fast, I might cough some, nothing that really gives me much trouble though. I also have sleep apnea, have had for years, didn't take my cpap with me, so I've gone without it for about 4 nights, can't tell any big difference at all.

I may not be as much help as some of the others, but I do love to try!
Never give up,
Never let up,
Never lose faith,
brenda
 

Connie

Active member
Joined
Apr 1, 2008
Messages
60
Diagnosis
03/2008
Country
US
State
Ca
City
Granite Bay
To Perplexed

My husband also has bulbar problems with deteriorating speech and swallowing difficulties but he has minimal muscle weakness. It has been a long road from when he first had symptoms (about 2 years ago) until today. His difficulties still are primarily with his speech and swallowing. He is certainly less energetic and unable to play basketball and softball like he did last year but he is still quite functional and optimistic.
 
Status
Not open for further replies.
Top