In disbelief

[gooseberry]

Hope you are having a good day today, Steph

 

[fishfin]

Donna had a hard time eating this morning, she said her tongue felt heavy, she said it must be from the med. Is it ALS our the med, I'm just wondering. P.S thank you guys 2000 pounds (a ton)

 

[affected]

Do you mean the Riluzole?
I'm not sure that it would cause this, but Chris only took it for a few weeks and did not like it at all and began to progress very rapidly in the hands over that few weeks and stopped. So others may have a better idea. Has Donna had any problems eating before this?

 

[Nikki J]

If you let the riluzole stay in your mouth for even a moment it will cause temporary numbness. That is all I have ever heard of. Btw. You do know to late it on empty stomach? 2 hours after eating and 1 hour before?

 

[fishfin]

yes she started the Riluzole, but her tongue felt heavy before she took the med, and her hands are starting to get weak and she had some shortness of breath, seems to be happening to fast. wow Nikki this must be hard to deal with for you seeing five other people in your family with this, stay strong

 

[dalvin]

I wouldn't describe my tongue as heavy, it simply doesn't work right. Won't move food around causing chocking as i can't get it moved back to swallow properly. Been using a peg tube almost a year now . Words are hard to form

 

[affected]

My Chris was bulbar onset, and he never used 'heavy' to describe his tongue, but that doesn't mean much as he found it very hard to describe those early symptoms!

He found he could feel his palate hanging and it would just close off without warning (drinking liquids especially). He said his tongue felt 'shorter', and his lip seal was effected early as he couldn't whistle. He never felt the fasciculations which amazed me as it looked like there were 1000 worms living inside the tongue.

If you are concerned the barium swallow studies aren't fun to do, but they do give so much information about what is happening there. I remember so clearly the amazement for me when we watched Chris first one and it was pointed out how far down the back of his throat his palate hung. For him, it was like - YES that's what it feels like! But describing that feeling wasn't easy, the picture painted 1000 words indeed.

 

[GregK]

> it looked like there were 1000 worms living inside the tongue.

I could have gone forever without that image Tillie!

 

[affected]

Sorry Greg, there is such a thing as too much information eh?

Until the day I asked him to poke out his tongue I was completely in real denial that anything was seriously wrong with him, despite him having at least 10 months of progressing symptoms, and we still at that point had no diagnosis. At this point we were still being sent around between dentists, ENT's and facio-maxillary surgeons and having teeth pulled and bits of bone removed from his jaw, various antibiotic treatments and saliva treatments, MRI's, 3D scans, ultrasounds and CT's.

I knew in my heart that moment that something was seriously wrong, even though denial kept me afloat for another 2 months until we had those dreaded words pronounced to us ...

 

[fishfin]

I just thought Donna would be getting better, she and my son were on their way back from the doctors and I was home by myself, I knew something was wrong when I was talking to her on the phone so I made her tell me what the doctor said. I never felt so alone in my life, it took her and my son about another 30 mins to get home, in that house waiting for her to get home it seemed like 30 days.

 

[affected]

That must have been such an awful alone feeling!

Share with us when you are ready, hugs to you both in the meantime.

 

[Janie H]

Sorry fishfin, I remember that day.

Janie

 

[Nuts]

Oh fishfin, what an awful feeling.

I'll never get over the fact that my husband was by himself when he got the news. It was his first visit to the neuro and we had NO clue. He walked into my sewing room when he got home and shattered my world by telling me that it was the worst it could be--it was ALS.

Wow, maybe that's the REAL reason I have not done any sewing since then (I blame time).

So who needs a therapist when we have this group? Stick with us, we'll be here any time.

 

[Nikki J]

My sister and I were also alone before we were diagnosed. I still do not know why my brother in law did not move heaven and earth to be there. We knew this was the critical test. I was not expecting the diagnosis at all so never thought of needing someone there ( denial thy name is Nikki?)
The worst part of being alone is that you have to be the one to tell at least one of your loved ones.

 

[gooseberry]

I was with my husband but I had suspected he had als for about 5 months before he was diagnosed. I did my best to prepare him but the shock is overwhelming.