Status
Not open for further replies.

Jeffreyp

Active member
Joined
Aug 14, 2013
Messages
36
Reason
Loved one DX
Diagnosis
08/2013
Country
US
State
MO
City
Cape Girardeau
Hello everyone-- Wife was diagnosed Sept 2013 with bulbar onset then that called off when they found lymphoma. She had 5 chemo but bulbar symptoms progressed so now they do not think the lymphoma was cause of neuro issues and stopped chemo. New doctorc wants to try IVIG because of sarcoid diagnosis in 2005--he thinks maybe all conditions stem from a problem with her immune system. Has anyone had IVIG therapy and what were results?

Big problem now is constant coughing, and "attacks" with gasping and moaning noises coming from throat-- she describes this as starting with a dry spot in the throat. One of doc thought might be laryngeal spams. Any ideas about how to manage these "attacks;. Did ake her to ER and they say airway is not blocked, lungs are clear and open and she is not aspirating.

Thank you for any help.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
My husband had IVIG for 6 months and did have some improvement with his strength and fasciculations. When the improvement stopped we stopped the treatment. I think it as something you should try, just make sure that she drinks at least a litre of fluid before the treatment, and that they give her Tylenol and Benadryl with the treatment, to prevent headache.
My husband sleeps with BiPap on and lately he has nights where he moans occasionally, I wake up immediately and ask him if he has pain, but he either says no, or is sound asleep. When I ask him about it during the day, he says he doesn't know why it happens, it is just a vocalization that happens sometimes when he inhales through his nose and exhales through his mouth. This is such a strange disease, I hope it helps.

Paulette
 

Jeffreyp

Active member
Joined
Aug 14, 2013
Messages
36
Reason
Loved one DX
Diagnosis
08/2013
Country
US
State
MO
City
Cape Girardeau
Thanks Paulette. All info is useful.
 

texastracy

Distinguished member
Joined
Jul 27, 2013
Messages
497
Reason
PALS
Diagnosis
09/2013
Country
US
State
TX
City
Acuff
I have laryngeal spasms. They sometimes start with a dry feeling spot or a crumb, such as a grain of salt or pepper, hits just the right spot to trigger a spasm.

I now stay very hydrated. Since I started keeping cough drops in my mouth for yawning my throat is moist. When I have a spasm I try to relax my shoulders and breath through my nose. My family and friends know to rub my back until I can breath normally. Then I don't attempt to talk for 5 minutes.

So far that has made them easier to handle. I think I have less because of the BiPap.

Tracy
 

Jeffreyp

Active member
Joined
Aug 14, 2013
Messages
36
Reason
Loved one DX
Diagnosis
08/2013
Country
US
State
MO
City
Cape Girardeau
thanks Tracy--will try that.
 

hjlindley

Senior member
Joined
Dec 1, 2011
Messages
760
Reason
PALS
Diagnosis
10/2011
Country
US
State
VA
City
Richmond
I get exactly the same feeling. I take Mucinex And when the secretions become really thick, I chew on papaya enzymes. Hydration and those two tricks have pretty much handled it. Good luck
Hollister
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>I chew on papaya enzymes. Hydration and those two tricks have pretty much handled it.

More info please ...
 
Status
Not open for further replies.
Top