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chrisroski

Active member
Joined
Apr 12, 2012
Messages
93
Reason
PALS
Diagnosis
01/2012
Country
US
State
Pa
City
Philadelphia
I was diagnosed last Jan with bulbar ALS. I was doing pretty good, had tube put in in June. Recently had Botox done for saliva and now I'm having problems sleeping, feel like thick junk stuck in my throat. I toss and turn all night long. Sleep with two pillows almost in a sitting position. Choking during the night . I use a nebulizer twice a day and have suction machine. Also, my face is sunken in, and my bottom lip just hangs Botox doctor said he can't do anything for that. Is there anything that can be done. My eyes are sensitive to light all of a sudden and feel like there not open all the way. . I look,horrible and feel horrible. Been getting dizzy when I stand up. Appt with neuro the 26th, seeing if I can move that up. You people know more than me, but I think maybe I need a bipap machine. Very lethargic, also I'm crying non stop, think that is emotional liability, although home situation is not great, as you know from previous posts. Still working on that. I know it is wishful thinking, but Im Starting to wonder if this is something other than ALS. I don't understand why my face looks like it's hanging down? Anybody with bulbar als have these symptoms? Be glad to hear from you.
 
My heart is with you.
I do feel very sorry while reading your post.

I am also a Bulbarian-ALS (or so the Neurologist who made my diagnosis said).

Since I had been drooling a lot when my diagnosis was made, the nurse at the ALS Clinic suggested immediately Botox injections into the salivary glands to help keep my oral cavity dry.

Although, I had told her I was going to think about it, I then consulted with a General Neurologist (a non-Hopkins one) and he advised against going that procedure, because in the end, Botox tends to weaken even more your swallowing muscles.

I still can swallow food (although, it has to be very very crushed or put on the blender so swallowing it would be lot easier for me).
I still can swallow my excess saliva without chocking and, I still can swallow water and thin liquids as long as I do it very s-l-o-w-l-y, and tucking my head.

I haven't had the PEG-tube procedure yet but my Pulmonologist at the ALS Clinics at Hopkins (Dr. Noah Lechtzin) keeps pushing it at every visit I pay to the Clinic.

Since my FVC stands at 67% (per my last visit to the Clinic in Sept. 2012), I will hold getting the tube for now (my next Pulmonologist appt. will be next month, then I will see).

My weight has kept fairly stable since I got from 169 pounds to 182 pounds, between Dec. 2011 (when ALS diagnosis was made) and Jan. 2012.

Last week I was weighing 179 pounds which is not too bad for a 6' 1" tall man.

As you see, even when we both are Bulbarians, our symptoms haven't developed at the same speed rate. PALS are like snowflakes, you might have a hard time finding two PALS with the same symptoms or event he same progression rate.

I do not want to use Rilutek yet because I find it too expensive for the benefits I would get from it, and it might affect my liver as well.

For emotional lability (which I have, those embarrassing episodes of uncontrollable laughing and crying) I was suggested Nuedexta at the ALS Clinic, but I also stopped short from buying it because I am mostly at home and my family have learnt to cope with these emotions outbursts.
Furthermore, I exposed myself to chemicals that in the end led me to the stagnation I am now and I wouldn't like to put in more in my body unless it's a proven (by FDA) therapy that at least can stop this disease progression.
 
Chris, I don 't have Bulgar yet but as you lose muscle, your skin gets slack... probably why your face looks different ...

Are you taking an antidepressent? Most us us seem to need it.
 
Chris how is your blood pressure? Something you might want to try for sleeping better is magnisium citrate. They make it in powder form.
 
Chris,

I am quoting from your first post in this thread you open:

---------------------------

"I was diagnosed last Jan with bulbar ALS. I was doing pretty good, had tube put in in June. Recently had Botox done for saliva and now I'm having problems sleeping,"

--------------------------

Did all these changes you are mentioning start right after the Botox injections?

If so, I guess you should've asked other PALS here in the forum for advice before having this procedure done on you.
We would've given the best advice we could.
 
Chris, my Mom had Bulbar ALS. The muscles start to atrophy (waste), in her case it was mainly in her upper body, face and arms. I think a bipap is essential for comfort. My Mom didn't want to use one, but when she developed bronchitis, she was forced. I am truly sorry you are going through this.
 
My friend started the Nuedexta and it has really helped with the emotional lability. she does not have the outbursts of crying now and is glad of that victory! The neurologist had a coupon to defray the cost.
Dawne
 
MDA's Quest Magazine has an article about saliva issues in their archives. read it online.
 
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