Status
Not open for further replies.

Wendi

Member
Joined
Aug 20, 2008
Messages
26
Reason
PALS
Diagnosis
07/2009
Country
NZ
State
Auckland
City
Auckland
Hi I am new. I am worried. my mother had PBP and passed away in 2000. The last few months I have had difficulty with swallowing, and now my speech is difficult. I have read lately MND or ALS is genetic. Maybe I have it? Just need some help and support, feel so alone. My husband died in a car crash 2 years ago, I have ME/CFS. I am 63. Have 3 sons but they did not see my mother so they have not clued on yet, and dont want to tell them until I am sure. I am keen on any alternative treatments. Anything reallY!:cry:
Wendi
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
Wendi-
Welcome to the forum, so sorry you had to find us. There is a tremendous amount of support in here from many different corners of the world.

Now take a deep breath and get ready to get busy tomorrow! Call your primary doctor and go see him/her, and ask for a referral to a neuro.

Don't stay up all night online-it will only make you have wrinkles!

My heart goes out to you for the loss of your mother, I lost my mother in 2003.

Keep the faith,
brenda
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Hi I am new. I am worried. my mother had PBP and passed away in 2000. The last few months I have had difficulty with swallowing, and now my speech is difficult. I have read lately MND or ALS is genetic. Maybe I have it? Just need some help and support, feel so alone. My husband died in a car crash 2 years ago, I have ME/CFS. I am 63. Have 3 sons but they did not see my mother so they have not clued on yet, and dont want to tell them until I am sure. I am keen on any alternative treatments. Anything reallY!:cry:
Wendi

I was diagnosed is March /April of this year with bulbar...I know what you mean about not wanting to say anything to anyone...I noticed my speach was a bit slurred and my toungue felt strange, and I was swallowing a lot more..particularly in bed at night. I kept things to myself for a couple of months, as long as I could hide it, and did very well.... I thought it was a silly thing to go to the doctor and just say my tongue felt strange and my speach was odd (to me) thought it might have been related to dental problems... I agree...get to your doctor straight away and get tested..hopefully all will be ok, but if not, start treatment soon...They said I was diagnosed early and Riluzole seems to be helping me, but the earlier you start it the more benefit you can get... Whatever, you need to know as soon as possible, as you dont need to live with not knowing, will only make you worry more, and hopefully there may not be anything to worry about...good luck..let us know.....
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
I am so sorry you lost your husband! That is sooo hard, and after your mom. God bless you.

you need to get this checked out asap, It may be nothing, but you need to check it for your own piece of mind.

you are in my thought...

april
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Wendi, so glad you found this forum. You will find such wonderful support here. As Brenda said, you need to consult with your doctor and hopefully he/she will be able to find out what is going on ... and give your good results.

We'll all be pulling for you.
BethU
 

Wendi

Member
Joined
Aug 20, 2008
Messages
26
Reason
PALS
Diagnosis
07/2009
Country
NZ
State
Auckland
City
Auckland
Thankyou all so much!
Wonderful to come here and find you all. Are there tests for PBP? Or is it just the symptoms that diagnose this?
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Wendy
I am so sorry about your mom and husband.
Your problems need to be addressed.
I dont want to scare you but the problems you are experence are very simular to mine.
There are other things that mimic ALS such as lymes.
See a neuro to be safe

Good luck Pat
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Wendi,

I am sooo sorry for your situation......go to the nuero and they will do many tests alot of things can mimic MND.
 
Status
Not open for further replies.
Top