Gag reflexes and Swallowing

[rocmg]

hah! i wish i had not read so much about ALS. I really am scaring myself -- but then I guess someone in thr family has to be the hardnosed one. I'm afraid my line of questioning with my mum's neuro might have been a bit aggressive (the journalist in me) and that maybe he went on the defensive a little bit. the fact that i broke down and ran out of the room crying should have been a little indicator that i wasn't questioning his authority, just expressing my concern. still, we have quite the opposity story of yours i think -- a neuro that is entirely inclined to believe this is ALS and can't really be anything else.

i hope you are having a nice day! i always meant to go to California... I have a friend from San Franciso.

 

[sral]

Rocmg,

I'm sorry to hear about how you are feeling. As the daughter of an ill mother I can understand how your emotions can go crazy. I also understand only too well how much it hurts to stay informed and be the one that attends the appointments.... unfortunately there is no other way for me.

How long has your mom been ill? Has she progressed much?

I wish you and your mom well.

 

[rocmg]

thank you for your concern, sral.

my mum's symptoms began back in april. she had very bad speech in September/October and seems to have either stabilized or gotten better (according to some family members and our family GP.) i have not been around to see her at what they say was her worst, so i am not seeing good or bad or progressively better or worse -- i am just seeing a very sick and distressed person. The threat of ALS looms over us constantly and we are finding little relief from that. Since we have not been given anything like a definite diagnosis, I am still holding out hope.

How are things with your mum? How long has she been sick and how are you managing?

god bless.

 

[sral]

Rocmg,

The good news is that it's been almost a year for your mom and she can still speak and no other limb or area has been affected. This is a good sign! Can she eat and swallow okay? Did she have a negative EMG?

My mom's first symptom was 3 years ago. In 3 years her speech has deteriorated and her walking is bad. She had a clean EMG in October but ALS looms here too. PLS can turn into ALS. Regardless of the diagnosis, the situation is what it is, i.e. difficulty speaking and walking and complete turning upside down of her world.

 

[hopingforcure]

Hyper gag reflex is a UMN symptom, which PLS is (UMN).

 

[sral]

Absolutely, hyper gag reflex is umn (PLS).

Rocmg did you mom have an EMG done? You said this neuro is really good and believes that it's ALS so does this mean he saw something in the EMG? The EMG is important here to determine an ALS diagnosis.

 

[rocmg]

the emg was inconclusive. "suspicious of anterior horn cell activity," according to the report. could this activity be innervation OR reinnervation? neuro did not say the nature of this activity. again, nothing very definitive. so we are going now for a second opinion.

i guess the reason that the neuro thought it was ALS not PLS was that mum's tongue looked "small" -- perhaps suggestive of atrophy?

right now, i would take PLS over ALS and hope for a slow moving progression that she could live with.

thanks for the positive vibes sral and hopingforacure. those have been so few and far between these past few weeks as I play catchup on what has been a very distressing time for my mum (i had not seen her in 6 months as i was living away from ireland in america.)


sral -- i totally empathise with you and sympathise with your mum. it's so hard to see them struggle with their emotions, trying to make sense of what has happened - or what is happening to them. you're quite right to say that your mum feels her little world has been turned upside down and inside out -- my mum feels the same. i think she's confused as why this is happening to her -- what did she do wrong. it's difficult to tell her that she did nothing wrong and that these horrible neuromuscular things don't discriminate. we can't even begin to truly grieve and then come to terms since we have no diagnosis... but then i think i only want a diagnosis if it is a good one.:sad:

god bless.

 

[sral]

Rocmg,

Your right regarding the grieving, we were just scrambling from dr to dr for about two years without thinking negative or positive. Everything changed when she got diagnosed with UMN disease. The Dr said he couldn't call it PLS because it hadn't been 3 years yet and told us it could turn into ALS at any time - so then this has been weighing on our shoulders ever since. Now it's been 3 years and were told that with bulbar onset it's actually 5 years that puts someone in the clear so again we continue to bear this weight. But as I said many times, regardless of what name is put to it, it's left my mom's world upside down. She can "literally" barely walk and has much difficulty with her speech. Her social network/life is almost gone! Not to mention that whatever monster this truly is, it's left her in so much pain.

Good Luck to you and your mom. Hopefully you're back at home so that seeing her will give you more peace of mind.

 

[rocmg]

dear sral. i'm sorry to hear about your mum 's lack of diagnosis. you're right to say that - no matter what it's name -- the result of her condition is very depressing for her and everyone involved.

the waiting game is getting me down too. i can't just go off and live my life like normal knowing that something like PLS/ALS/PBP could lurk just around the corner for my mum. i know she can't help but think about her it too. so where exactly we go from here is anyone's guess.

i hope your yourself are keeping well and staying strong.

god bless.