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klarie

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Joined
May 19, 2008
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2
Reason
CALS
Country
US
State
MO
City
Kingsville
I am so new at this I am not sure if a am doing it right. I found this site as I was desparately searching for information. My husband (60 yo) has had progressing speech and swallowing problems for over a year now. We kept thinking his symptoms were from a stroke but MRI/MRAs were normal. He had an EMG last Thursday and the nuerologist said that she could not make a diagnosis of ALS yet because it has not progressed to his limbs, but she thinks it is ALS. Now we are left in limbo not knowing what to expect and not hooked into any treatment or support. I just feel numb and constantly on the verge of tears. Has anyone else had this kind of presentation? What can we do to survive? Are there support systems out there for people who don't have an "offical" diagnosis yet? Please help!
 

brooksea

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klarie,

I would suggest you get your husband to an ALSA certified clinic. Your local neuro may or may not be up to par on diagnosing ALS. If he/she suspects it, then I would definitely go to an ALS Clinic. My husband's neuro automatically referred him to Emory ALS Clinic when he believed my husband had ALS.

Here is link provided by ALSA to approved clinic in your area:

http://www.alsa.org/community/defau...N=7d5964-4420c236-249b-4003-a699-d46330c27a6d


Very sorry to hear you are having to go through this situation. The problems your husband has with speech and swallowing is referred to as Bulbar symptoms. I really want to reiterate that you need to get your husband to an ALS Clinic ASAP! Bulbar symptoms are nothing to mess around with! I don't mean to be an alarmist, but things can progress at an unexpected rate with Bulbar onset. It sounds as if your neuro may not have all the facts about ALS. Do not fault him/her, as ALS is rare (supposedly).

Please keep us informed and welcome to the forum...
 

andyvaughn

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Feb 12, 2008
Messages
138
Reason
CALS
Country
US
State
ca
City
thousand oaks
Klaire, sorry to hear about your husband. My husband was recently diagnosed with ALS, he started with slurred speech and swallowing problems, but it rapidly (within a few weeks) moved into his left arm and left leg. We thought he had a stroke at first also, but had normal brain imaging as well.

I know the limbo can be torture. My husband was diagnosed with ALS 2/20, we started seeing doctors for this in January, so it was relatively quick, but that few weeks was horrid. The weeks after the diagnosis were even worse though... I don't know which is better ... not knowing it's ALS and having some hope, or knowing and getting to accept it. I would give everything I own and then some to go back to December 07 and freeze time there....

That being said, I presume you saw a neuro experienced with ALS? I know there is a support group on this forum for progressive bulbar palsy, has your doctor ever said he might have that? I don't know much about that disease, but it seems to be localized to the brainstem and I think slowly progressing?

I know how scary and hard this is, I hope you find the answers you are looking for...

Andrea - wife of Pals Jim
 

klarie

New member
Joined
May 19, 2008
Messages
2
Reason
CALS
Country
US
State
MO
City
Kingsville
Thank you

Thank you, Andrea and CJ for your quick reply. It is good to know I am not alone on this journey. I can already see that this forum will be a strong source of support! klarie
 

drstw64

New member
Joined
May 20, 2008
Messages
5
Diagnosis
06/2007
Country
US
State
il
City
chicago
Bulbar Palsy - Help

My sister was diagnosed with bulbar palsy last year. We didn't know what it was. We thought she had a cold. Now she can barely use her tongue. She can't talk. Nothing else bothers her besides the emotional mood swings. She swings from laughing severely to crying when she can't stop. She is starting to drool and can't keep her mouth closed. She has to keep a handkerchief in her hand all the time. She's 61 years old. She doesn't have insurance because she is a self employed seamstress. I don't know where to begin. I tried calling the Mayo Clinic and they want $5000 just for the initial examination. She has begun the process for Medicare/Medicaid but that takes forever.
She's had a MRI but I don't think she's gone to a neurologist. Any suggestions?
We are in Chicago. I can't look at her without wanting to cry. Our mother is 80 years old and I can see it wearing down on her.
email me at [email protected] with any suggestions. THANKS!
 

brooksea

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Have you registered your sister with the MDA and ALSA? The MDA will pay for the appointment with the ALS Clinic. My husband was without insurance for one month while waiting for Medicare to kick in and the MDA paid for his appointment. We knew they would, as Emory is very thorough in sending out info before your appointment, detailing options for their patients.

In Chicago there is an ALSA Certified Center:

University of Illinois at Chicago
Department of Neurology
912 S. Wood Street
855N NPI, M/C 796
Chicago, IL 60612-7330
Julie Rowin, M.D.
312-996-4780

Also, please visit the ALSA site for lots of information and help. alsa.org

Good luck to you and your family. There is help out there, just need to turn over a few rocks to find it! Feel free to come to this forum with any questions you may have. There are lots of people willing to give advice and tell their story.
 

gagirl

Member
Joined
Feb 9, 2008
Messages
23
Country
US
State
GA
City
Douglasville
Support Buddy for Wife of ALS Patient

CJ - I have just joined and noticed you were also from GA. My husband was just diagnosed 03/28/08 and is believed to have had ALS for the past 5 years. As his health goes so does the support of family and friends who can't handle seeing him struggle. I'm just looking for someone to connect with that can see and feel what I do.

Thanks,
Windy
 

CindyM

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3,543
Reason
Learn about ALS
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State
New England
City
Anytown
Hello Klarie, Windy, Drst and all our other new members. These are scary times but you've landed in a good spot on the internet. The folks here are very kind and very knowledgeable. I am glad you found us! Cindy
 

brooksea

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Windy

I'm very sorry about your husband. I will get in touch with the moderators of the forum to allow us to communicate.

Do you go to Emory? They are very helpful to us. And have you registered with the MDA and ALSA? You will need to.

I'll be talking to you, don't worry. We are strong.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi CJ. If Windy OK's it I can PM her email address that she signed up with to you.
AL.
 

gagirl

Member
Joined
Feb 9, 2008
Messages
23
Country
US
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Douglasville
CJ - I do approve, but I'm new to this and I don't know how to email AL. ?

Windy
 

brooksea

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Messages
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Al will get your email address you used to sign up for the forum and he will send me private message(PM) with your address. I then will email you and you will receive the message in your email box, not on this forum.

Since you are a new member, you don't have the capability to send or receive private messages yet. So emailing each other is the only option right now. Just don't give out your email publicly on any forum, as it is dangerous to do so.

I'm sure AL or Cindy will get to this sometime today. :-D
 

drstw64

New member
Joined
May 20, 2008
Messages
5
Diagnosis
06/2007
Country
US
State
il
City
chicago
What does the future hold

Jimercat

Thank you SOOOOOOOOOOOOO MUCH for that information. I will look into the websites. My sister got a feeding tube the other day. I don't have the guts right now to check her out. I'm going to review this information and make some moves. God Bless you!
STW:-D:-D:-D
 
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