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sprybrry

New member
Joined
Jun 14, 2012
Messages
4
Reason
PALS
Diagnosis
07/2012
Country
US
State
ga
City
marietta
I've been diagnosed with als.
My first symptoms (cramping,sore calf muscles and balance)started about a year ago.
I am still walking though not very good but i can do chores to help my wife around the house.
My question is about bladder control and pain.
I can't go all night without getting up to go.
When I'm awake I have to go every hour or two.
It seems like every time I get up from my chair I have to run to the bathroom.
Sometimes I have pain in my joints while I am walking and my cramps are painful,but more often I get stabbing pain in my heels, ball of my foot ,calf muscle ,ribs,even my head.
this pain will happen while I'm at rest and will be intense but will only last a second or two.
Also,I get daily headaches now, I never got them before.
Is this normal with als?

And thanks for the kind responses to my post last year.
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,663
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
So sorry for the dia no sis.
BiPap use may help with the headaches. PALS get them because they are unable to blow off CO2. I found that using BiPap at night alleviated my frequent awakening to pee.
Check out info from a Neuro nurse who has ALS. ALS from both sides dot org. Lots of good explanations.
 

Nighthawk

Senior member
Joined
Jan 17, 2013
Messages
833
Reason
PALS
Diagnosis
12/2011
Country
US
State
Maryland
City
Anne Arundel Co
Hi,

Daily headaches is definitely not a good sign for PALS.
That means that CO2 is building up internally and has become difficult for your body to completely eliminate it. Thus, you're a string candidate for a BiPAP.
Just check with your Pulmonologist at your ALS Clinic to see if he can prescribe you a BiPAP.

Hope this helps.


NH
 

sprybrry

New member
Joined
Jun 14, 2012
Messages
4
Reason
PALS
Diagnosis
07/2012
Country
US
State
ga
City
marietta
I still have good upper body strength.I can sneeze, cough and sing(I'm singing Ain't No Grave this Sunday )I don't have the lung capacity I used to but I don't seem to have problems breathing.The headaches come on sudden and strong then dissipate in 30 min or so.I have not been to clinic maybe it's time to go.

Michael
 

Nighthawk

Senior member
Joined
Jan 17, 2013
Messages
833
Reason
PALS
Diagnosis
12/2011
Country
US
State
Maryland
City
Anne Arundel Co
You should go to the ALS Clinic as soon as possible when you are noticing these headaches happening to you for "no apparent reason" when you didn't have them before.
It would be advisable for you to get your %FVC value and O2 levels checked by your Pulmonologist at the Clinic.

Regards,

NH
 

sprybrry

New member
Joined
Jun 14, 2012
Messages
4
Reason
PALS
Diagnosis
07/2012
Country
US
State
ga
City
marietta
For the last few days I've been trying to breath deeper and I've only had one headache.I guess I've been breathing shallow without knowing it.Thanks for the help.

Michael
 

pearshoot

Senior member
Joined
Feb 6, 2011
Messages
636
Reason
PALS
Diagnosis
02/2010
Country
US
State
mo
City
nixa
to improve breathing you need to learn about stacking air.. do a search on breath stacking it will improve your fvc
 
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