No bulbar issues?

[Laffy130]

Wow, never thought that I would be a member of a site like this. I am a 28 year old female and the mother of a beautiful 6 month old son. I first became concerned when I noticed I was "walking funny." I was very weak in my legs (slower than molasis going up stairs) but I thought that was normal after childbirth. Went to a chiropractor, thought it was an alignment issue or perhaps a weird effect of my epidural I received during delivery. Chiropractor was great, but admitted right away that this was something call foot drop and told me to see a neurologist. So I did...a normal MRI and after an abnormal EMG test showing weakness in my feet, legs, hands, and arms the neurologist sent me to an nueromuscular specialist. The specialist gave me a thorough exam and another EMG which confirmed weakness in my legs and arms. He then said, "If you were 70, I would diagnose you with ALS right now, but because of your age and recent childbirth, I want to dig much further." So we have been digging...another normal MRI of head w/ contrast, 2 more rounds of blood work, and a spinal tap which has recently come back normal. ALS specialist said the spinal tap was the last test.
What confuses me so much is that I have absolutely no problems swallowing or chewing? Is it possible to diagnose ALS without bulbar issues? My husband and I are determined to "love me through" this nightmare that I just want to be over! Can't bear the thought of not seeing my 6 month old grow up, or even having another child.

 

[Annie's Phil]

I am dreadfully sorry to hear of your health difficulties. The answer to your question is yes, it's possible to have ALS without bulbar involvement. My wife Annie never had any bulbar involvement.

I will be praying that your symptoms are due to something else, and that whatever the cause you'll receive an overwhelming supply of grace and peace.

 

[bowser]

The support group we used to attend, my wife was the only person with ALS who wasn't in a wheelchair.
However, she was the only one who could not talk.............communicated via ipad.........and could not eat.

There was one guy there I had a wonderfull conversation with. He was in wheelchair and his wife fed him but he and I talked for a long time.

He had......NO.........problem with speech or sallowing.

He passed away 6 months ago.

 

[bowser]

It gets frustrating when one tries to post and gets told their post is delayed because it has to be reviewed.

Maybe that is why there is so little activity here.

 

[hjlindley]

Yes it is possible to have ALS with no bulbar symptoms whatsoever. I had a probable diagnosis in 2009 definitive diagnosis in 2011 am still speaking and swallowing. It started in my right hand has moved to my legs and my left hand and out of my breathing but I'm dictating this. Sorry you have to even be looking into this.
H

 

[bowser]

After having a previous post rejected, I think I am DONE with this ALS forum.

I posted a polite response to laffy130 and it got barred.

Why ?

Are only ceratain posters welcome here ?

 

[olly]

Hi bowser,its nothing personal sweetie......sometimes a single word can trigger it of to moderation.
Try changing the wording of your post.
Oh, and a very warm welcome to the forum.

 

[ottawa girl]

Bowser,

Don't be quitting so fast! We're not quitters here. I had the same experience initially.

Words like tr eat ment can trigger moderation. Typically the delay isn't long, but it is vacation season, so perhaps David is away. Also links to other in ter net sites can cause it as well!

You sound like a wonderful man taking great great care of your wife. I'm certain you will have lots to contribute! After 15 posts ( I think) you will be able to access private messaging which any also be helpful to you and avoid frustration.

Hope you stick around!

 

[Outdoor_Man_Nc]

I am Bulbar and had no limb problems in the beginning. I also got banded from the site and don"y know why but am back.

 

[Annie's Phil]

Glad to see you Bob!

 

[Annie's Phil]

And bowser, I second what Elaine and olly said. Messages getting sent to moderation is automated. I think we all find it a bit frustrating at first, but when we realize that the purpose is to protect the integrity of the forum from trolls, salesmen, scammers, and just plain trouble makers, then it's not so annoying. I adopted the mindset of expecting a post to be sent to moderation, and then when it isn't it's a pleasant surprise.

 

[Barbie]

Hey Bowser, don't worry about moderation. it happens to everyone sometimes, but they almost always show up later. no on is completely sure what triggers a moderation--some words we have figured out. welcome!

Laffy, I am so sorry you are worrying about ALS. Iwould hold on to the hope that it is something related to the recent childbirth. also, based on your age and sex, MS? not that MS is great--but it is a better diagnosis than ALS. for now, just enjoy that baby and being a new mom. try not to let the possible diagnosis get in the way. take plenty of pictures and try to have fun. I love that stage in a baby--they can smile and are developing their little personalities!

 

[ottawa girl]

Laffy,

Following her epidural, a friend developed a foot drop and generalized muscle weakness. Apparently in rare instances, this can occur. She was told at the time, it could take several months to heal, and that she may never get totally back to normal. That was twenty one years ago. She does have a small remnant of those initial side effects- a slight "slapping" of the affected foot - but other than a sore hip caused by her gait issue, she's AOK! ( and baby Emily grew into a beautiful young woman)

Here's hoping your situation is quickly resolved.