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John1 said:
Chucky, the bounds of normal in ALS are very broad. 18 months might be a median but the range is much greater. I started with bulbar symptoms and yes I have good days and bad days with my speech. On a good day my speech is near normal; on a bad day people struggle to understand me. Oh, my first symptom was slurred speech 12 years ago.

Her symptoms sound very much like ALS but without an EMG it's only a guess. If she is happy in denial and she is not being robbed by a scam doctor then there is little loss in her not seeking an immediate ALS diagnosis as there is virtually no treatment anyway. I was quite happy in denial for a while. Of course if it is not ALS but is something treatable then waiting could be very detrimental.
I have slurred speech 7 years and have good and bad days noww I have weakness in mmy arms How about you any other symptoms
 
Hello All.
Well My Mom had her appointment at the ALS clinic here in Oregon today. She was told Bulbar ALS- Isolated? She got the impression that they don't think it will progress past the bulbar area. I didn't know this was possible, any ideas out there about this?
Love to you all-
Holly (hopealive)
 
Hi Holly,
My experience has been that the diagnosed of ALS can be: Definite, Probable, Possible, and Suspected ALS.

For example, my husband has been diagnosed with"Progressive Bulbar Palsy", which falls into the category of "Possible ALS", although he also has hyperreflexia in one limb, which may push it to "Probable"? In any case, his neuro prefers to NOT to call it ALS at all, since it is not "Definite". Different neuros seem to handle the terminology differently based on patient, symptoms & progression.

More information at: www.alsa.org/files/cms/Resources/Criteria_for_Diagnosis(3).pdf#search=%22possible%20probable%20definite%20ALS%22

------------------------
"Bulbar ALS - Isolated" is a new one to me (although I am certainly no expert....just somebody's wife :) ) . Maybe you could talk to your mom's neuro and get the full scoop.

Best Regards,
Lisa

 
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Hi Lisa,

I think that was just a misunderstanding. It is not isolated, just plain old bulbar onset ALS. Thanks for helping me understand.
Thinking of you and your husband. I sure appreciate this forum.
Love,
HOlly
 
Hi Davis06. Could you repost your message without the link to the advertising website. We don't allow advertising on this site. Sorry. I hadn't heard of the new way to do PEGS and that site had no information that I could find on it. They only wanted to sell me books.
 
sorry about that

Al
Sorry about that I just thought you might of heard of it. They have been on me about a peg as I have been putting it of. I will get back later .

Davis06
 
Pegs?

If anyone has information on pegs on the internet please send me private message as I would like to know more about them. Not interested in buying books! I'm too cheap. I would love to see some pictures of them.
Hi GrampsAL, good to be back to the forum for me.

God Bless
Big AL
 
pity party

Al -if you invite me I'll come to your pity party. :) I think at some point you should be allowed to feel crappy for a min-or 2. :)
My sister has ALS and reading some of your threads has helped me so very much. Thank you and I hope your life is moving along as well as it can. I can not even imagine going thru what folks with ALS do just to live "normal" lives. Thank you for the hope.
Kellie.



MtPockets said:
Fact verses fiction:

THOUGHT: Sure I'm dying but everything is fine, wonderful, just great how about you. Ever feel like asking someone that? Don't answer.

I know how you feel. We all go through this. Some get mad at the world, God, friends, family , everybody and just make themselves a pain in the butt basically. You get to chose how YOU will react.

I usually try to put on my "I'm ok your ok face" when around others. I try as much as possible considering all that may be happening to have a positive approach and outlook to live every day to it's fullest. And it's amazing how many people believe I'm doing great, when inside I'm ?. It changes all the time. Some days I do not know from one minute to the next how I'm dealing with this, it's overwhelming.

I do that mostly to help my loved ones, to be a source of hope for others, yet like tonight I can't sleep because of pain, spasms, and having a pity party, but no one came to the party.

Well maybe God. I think he understands when I get in these moods, swings, bad times, and just have to let it out and vent. I laid in bed crying for awhile, but could not sleep so got online instead.

But somewhere deep in my heart I know God loves me and you, and this will work out, I will make it through with God's help and strength. After it is all over I will be with him forever, no pain, no fears, no mood swings, no spasms, no pills, finally complete PEACE, believe me it will be worth it all, to finally see my lost loved ones and walk in the presence of Jesus Christ.

That is my rock that I hold onto, to get thru the lows, and to make me truly believe I WILL BE ALRIGHT THIS DAY. Not tomorrow, next week, next month, just this day.

I can only live ONE DAY at a time and make the absolute most of that day to help myself and others. There is no second trip around. This is it folks.

Do you have anything to use as your rock? Your strength? To get you through this.

Have you given thought to how God fits into your life? Now might be a very good time. You have some time left to consider it, before it's too late. Please, I'm serious, God really does love you and He said if anyone comes to me I will in no way cast them out. I respect your choice, but remember you will live with it forever.

I feel your pain, may God Bless and keep you.
AL
 
Peg Tubes

Thanks AL both sites were very helpful, just what I wanted to see. looks like I'm getting closer to needing this than I thought before after this morning. See quote below:
MtPockets said:
Another surprise this morning. Woke up at daylight with spasm, charlie horse in right half of tongue? Never had that before. Massaged it and put moist heat on until it let off a little and then sipped some hot coffee. Feels little better now but having trouble swallowing. Knew it was coming, just not this week, with everything else.

I woke my wife up and could not speak to tell her what was happening, so had to use signals. It feels kind of like my muscle on right back of tongue is dead or numb or dumb, take your pick. Anyone else run into this one?

Well, finally back to semi-normal, if there is any such thing for me. Good mood anyway, not crying at least. I did not know about Cheryl passing on. So sorry to hear about it.

Thanks for all the support and comments, I needed them, just hope I can be there for you when you need me.

I sure am glad I'm not God, I don't have to FIX all these problems that keep creeping up. I don't know how He puts up with us sometimes, guess it's just LOVE.

LOVE forgives a multitude of sins and stupidity.

God Bless
Big AL (From Mississippi)
MtPockets:-D
 
i to am haveing diffucult swalloing feels like i have to clear my throat alot and when i swallow it feels like a lump there as if i have to swallow hard my emg was clean but the nerve condution was abnormal i told my doc about the swalloing but he rubed me off and said i didnt have als because of no spacticity and normal reflex and all this in less than 2 months just wondering does als move this fast?
 
Not usually zac. So he says no als but did he say what he thought it might be?
AL.
 
he said he thought it was nerothaphy but said i didnt show any symtoms of it,but the test he said suggesred it.the twithes in my legs are horrible i dont understand why the test did not pick them up.and thet acke really badly but i think the swalloing really bothers me the most al.
 
Best I can say is hang in there man and hope you get some changes that will show up on some test. AL.
 
thanks al,i go for b-12 bloodwork next week mabey it will show something.
 
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