BULBAR ALS Questions

[chucky]

Hi there:
A very close family member has recently been diagnosed with Bulbar ALS. Very classic symptoms (swallowing issues, inability to understand her talk, coughing - minor; but thru meals, and incontrollable emotions ...laughing and crying, twitching of nerves in arms). Only 1 diagnosis has been provided - BULBAR ALS after 1 year of searching and she is in complete denial.

A second "out of country doctor" has seen her and is now saying she doesn't have anything close to ALS. Her MRI is clear, no EMG's done, cannot still understand why tongue is very weak, and is treating her with immunoglobulin to boost her immunity. Also, found a small tumor in her brain of which there is nothing to be concerned.

My questions to those who have ALS Bulbar: Some days we understand her and some days we don't. Is that normal?

Also, is weight loss (loss of close to 15-20 pounds) since mid last year normal? I am guessing that its a side affect of not beeing able to swallow.

I pray to God its not ALS but he has given her her "less than 18 mos" speech. Can he be wrong? What's that percentage?

Worried.

Chucky

 

[slm455]

Hi I am new to the site.

Hi chucky!

Sorry to hear about your news. But you have come to a great place. It has helped me alot. I have bulbar als symtoms. some times my speech is better than other days. not much but my family can tell. I have'nt been fully diagnosed. I go for my 1st emg thursday. from what I can understand people with bulbar symtoms are not supposed have good and bad days. maybe sometimes we take it slower than others. Best wishes.

Slm.

 

[chucky]

Hi SLM455:
Clarity - so it is normal to have good and bad days in speech?

Have you lost weight?

Chucky

PS It already sounds like I am in the right place - thank you!

 

[slm455]

Hi!

I have lost a few pounds but nothing alarming. I try to keep my calorie intake up. I have not asked anyone else in the forum if they have good or bad days. I just know that I have more bad days then good. I hope this helped some. Hopefully someone else can add to this. Best Wishes
Slm.

 

[Al]

I don't have bulbar symptoms but have had friends with them. They did have some days when their speech was worse than other days. Weight loss is a general charachteristic of ALS. Usually because of swallowing issues and a general weariness associated with chewing. It becomes a chore to eat and chew food. Chucky: where was the out of country doctor? Can I ask where you and your friend are living? The IGG usually only helps if they think it is a motor neuron disease with lower motor neuron signs only. Without an EMG and nerve conduction study I'd doubt if they could diagnose anything. I think they're guessing. The 18 months for bulbar ALS is usually ? about right but there are people on this forum with bulbar symptoms after 4 or 5 years. Don't give up hope.

 

[MtPockets]

Having bad days? What's that?

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

 

[Meg1]

Your relative's symptoms are classic for bulbar ALS--everything you've told us fits and nothing contraindicates ALS. She needs to be evaluated at an ALS center, though, to confirm the diagnosis. If it's not ALS, ALS experts will be able to point you in the right direction towards an alternative diagnosis.

Just so you'll know, the world is full of unscrupulous people who exist (apparently) for the sole purpose of separating credulous and scared people from their money. I'm guessing you're paying a pretty penny for those "treatments" and they aren't stopping the progression. Right?

 

[chucky]

Hi everyone!
WOW! amazing responses! My relative believes after coming back from her treatment in Asia that she is going to be cured due to her faith and a number of other miracle-like possibilities.

So, while at that, a local Asian doctor (who does have credentials from Europe) is assessing her. But, so far no mention of muscle/nerve tests. Just MRI. I hope they know what they are talking about - I fear of false hope (which they already have given her). The doctor in the US was very quick to diagnose her after all tests done.; but offered her the option of getting another doc's feedback. FAmily members have all asked her to go to a US-ALS center and get confirmed; and due to out of country doc/family re-assurances and inexpensive secondary diagnosis, she has decided not to.

Right now, the Asian docs claim that her weight loss is apparently due to bad eating habits. They cannot understand what is causing tongue muscle weakness and are happy MRI's came out clean. They have ruled out ALS.

I continue to worry as it doesn't sit well with many of us.....

Chucky

 

[chucky]

ps to answer another member's question...so far no muscle weakness anywhere else. Just the esophageal throat area. Some muscle/nerve twitching on hands. We are in major cities so care/ALS centers are easily accessible.

So, IGG is sounding not useful here....but may holp boost immunity anyways?

chucky

 

[John1]

My questions to those who have ALS Bulbar: Some days we understand her and some days we don't. Is that normal?

I pray to God its not ALS but he has given her her "less than 18 mos" speech. Can he be wrong? What's that percentage? ...Chucky

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.

 

[chucky]

Well, thanks everyone. Your impressions are exactly what I feared - but, I will be sure to keep you all posted. Certainly, this is going to take a while since the Asian docs have put a spark in her hope that it is not ALS - but that I also hope symptoms don't rapidly progress at the same given time.

Thanks everyone again.

Chucky

 

[marlo]

Hi there:
A very close family member has recently been diagnosed with Bulbar ALS. Very classic symptoms (swallowing issues, inability to understand her talk, coughing - minor; but thru meals, and incontrollable emotions ...laughing and crying, twitching of nerves in arms). Only 1 diagnosis has been provided - BULBAR ALS after 1 year of searching and she is in complete denial.

A second "out of country doctor" has seen her and is now saying she doesn't have anything close to ALS. Her MRI is clear, no EMG's done, cannot still understand why tongue is very weak, and is treating her with immunoglobulin to boost her immunity. Also, found a small tumor in her brain of which there is nothing to be concerned.

My questions to those who have ALS Bulbar: Some days we understand her and some days we don't. Is that normal?

Also, is weight loss (loss of close to 15-20 pounds) since mid last year normal? I am guessing that its a side affect of not beeing able to swallow.

I pray to God its not ALS but he has given her her "less than 18 mos" speech. Can he be wrong? What's that percentage?

Worried.

Chucky

Hello Chucky

I to have Bulbar,, and the answer to your question i s " Yes". I use to have mostly bad days with my voice then it got alittle better. Now it is very up and down. I am starting to lose some weight now too.

Sorry you find a need to be here,, but welcome just the same.

Love and Prayers

Marlo

 

[slm455]

Hi Marlo

Hello Chucky

I to have Bulbar,, and the answer to your question i s " Yes". I use to have mostly bad days with my voice then it got alittle better. Now it is very up and down. I am starting to lose some weight now too.

Sorry you find a need to be here,, but welcome just the same.

Love and Prayers

Marlo

With your Bulbar symtoms did it effect your speech or just your voice.

best wishes. slm455

 

[marlo]

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

Hello MTPockets,

I was so glad to read your "Quote",, i feel very much the same as you. I too know the Lord and Pray for all on this forum as well as others to "seek" him while he can still be found. As you said,, we will indeed have to live with our decision for along time.
Keep up the good work for him,, and you will be rewarded someday.

Love and Prayers
Marlo

 

[marlo]

With your Bulbar symtoms did it effect your speech or just your voice.

best wishes. slm455

Hello,

Yes it effects my speech as well as the tones of my voice. My children laughingly ,, tease that i need to write my own dictionary. So people can figure out what i am saying.

Love and Prayers
marlo