bulbar palsy

[Wendi]

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!
Wendi

 

[brendapals]

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]

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!
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]

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]

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]

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]

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]

Wendi,

I am sooo sorry for your situation......go to the nuero and they will do many tests alot of things can mimic MND.