Giselle Vargas

Following up with those of you on Ibudilast? Are you still taking it? Seeing any benefits? Breathing any better?

I am also curious if anyone is taking BOTH ibudilast and sodium phenylbuterate.
( sounds like Ammonaps must be the European name for SPB )

Thank You in advance!

Hi Sarah,

I am sorry you are struggling with these symptoms. Doesn’t sound very similar to my husband’s situation but that doesn’t mean anything bc each person is unique. I’m wondering if you have had unexplained weight loss and noticeable muscle atrophy? That was key in our diagnosis. Also he had wide spread fasciculations or muscle twitchi…[Read more]

https://images.app.goo.gl/TEJdCzgn5d1uJnEV6
I wonder if this type of step in bath tub/shower that I have seen recently would be a good idea ? Any thoughts?

When will it actually be available in Canada? We would go to Canada in a heartbeat. I can’t find any news articles on this. Does anyone have any more info on this?

Walter, I would definitely gets Lyme test. Why not? It can’t hurt and may help you. Let us know what you decide to do. Stay strong!

best wishes,

Giselle

Hi Dagmar,
Is  it possible to post a link to the ALSA petition to expedite access to AMX0035?

Such exciting news!!

Giselle

Hi Stephanie,
Which doctor or doctors did you see at the Mayo Clinic? After reading your post I am considering going for another opinion on my husband’s case. It sounds like they are extremely thorough. My husband also lost exactly 40 lbs over about 8 months! Weakened diaphragm and Very shallow breathing .. but we never had a SNIFF test. He has w…[Read more]

Lots of excellent information here! Thank you all! I am wondering if anyone has used a power plate or body vibrating device? How would this be used for ALS? Any thoughts?

thanks,

Giselle

Hi John, Sorry you are dealing with this! Do you live near NYC or a city with a good ALS clinic?

Hi,

Well, the diagnosis of motor neuron disease came fairly quickly…. a month after we initially went to our internist with concerns in October 2019. Looking back the my husband ‘s symptoms probably started about 6 months before we went.  Then it got a bit more complicated bc the first neurologist (November 2019) said ALS and sent us to see ex…[Read more]

Hi Susie,

Thank you for responding! It sounds like you are a very strong woman and really hanging in there! My husband’s symptoms do sound similar to yours. Neck muscles are weak. He has a very good neck support he bought on Amazon…brand name is VIVE. I am curious as to what kind of speech problems you have. Do you slur your words or is y…[Read more]

Thank you Dave! I will order this for my husband. I also was reading about a Pomegranate seed oil extract from Israel that uses nanotechnology… I believe it’s called Granagard. Have you heard about this?

Hi,

We are also interested in Ashwaganda. I’ve read lots of positive reviews /info on it. May I ask, what is the name of the supplement your Dad takes? How much does he take?
Thank you and hopefully more people will chime soon in with info!

Giselle

Hi Dean,

Your experience sounds so similar to my husband Sergio’s! Very recently he was having trouble clearing his throat so we got a cough assist device which is very helpful. The therapist said in addition to clearing it helps inflate the lungs and keep them in better shape. May be helpful for you? I’m curious… Did your doctor use the wor…[Read more]

Hi Diana,

I hope that the results of the sleep study are helpful. My husband sleeps with a non invasive ventilator which allows him breathe while lying down. He does breathing exercises with a spirometer and stacked breathing. I’m not really sure if it helps or not. If you don’t mind my asking, does your husband have a hoarse voice or does he slu…[Read more]

Hi Igor,

Your ENGLISH is fine. What is Power Plate? Curious.
Thanks, Giselle