[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!

[Giselle Vargas]

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 twitching. I would advise you to see another doctor if you are not satisfied or not feeling heard.  Best of luck to you!!
Giselle

[Giselle Vargas]

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?

[Giselle Vargas]

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?

[Giselle Vargas]

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

[Giselle Vargas]

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

Such exciting news!!

Giselle

 

[Giselle Vargas]

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 widespread facsiculations and generalized weakness too. His neck has become weak. I have read about Kennedy’s but didn’t know there is a blood test. I often feel confused by my husband’s symptoms bc they don’t match typical patterns I read about.  I wonder if we have missed something!
Was it difficult to get an appt at Mayo? Did you come from out of town? I’m wondering if they can schedule everything together for out of town patients.

Best wishes to you and your father!

Giselle

 

[Giselle Vargas]

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

[Giselle Vargas]

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

[Giselle Vargas]

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 experts in NYC. The first specialist said early ALS or PMA. The second specialist ran all the test again plus additional tests and said ( February 2020) it is motor neuron disease but not classic ALS and was hesitant to give a specific name. We haven’t been back due to Covid-19 but we have an appt on the 27th. I guess some cases are harder to classify? I understand that in Britain they don’t use the term ALS… just use the term motor neuron disease.
At any rate, that is our diagnosis story/timeline.
Giselle 🙂

 

[Giselle Vargas]

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 your voice increasingly low and raspy. I ask bc I have read that slurring is upper motor neuron issue and hoarseness is lower motor neuron. Just curious, I don’t want to be intrusive. I am sending you a big virtual hug! Stay strong !!

Giselle

[Giselle Vargas]

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?

[Giselle Vargas]

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

[Giselle Vargas]

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 words ‘respiratory onset’ with you? Our MD hasn’t … I found that term online… but it’s definitely a different pattern than most. We certainly understand how Distressing this whole experience has been especially with Covid adding a whole new layer of anxiety to the situation. We are on Long Island NY and went through a very rough patch with Covid back in March/ April. I am terrified of the virus since Sergio’s breathing is already compromised. Hang in there… so many promising treatments are just around the corner ? We are both sending you and your family a big virtual hug of solidarity and support!!

Giselle

 

[Giselle Vargas]

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 slur his words?

 

[Giselle Vargas]

Hi Igor,

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

[Giselle Vargas]

Hi, first of all thank you for welcoming me to the group. My husband Sergio was diagnosed with ALS 6 months ago. We were just getting back on our feet from the diagnosis and boom, the virus hit. It has been super stressful. His disease has started in his chest muscles and diaphragm so I am terrified of him getting COVID19. We are from NY and lost 2 very dear friends to the virus … a husband and wife. We are very lucky in many ways, great family, good health care and insurance but boy has this been difficult. The virus really took a stressful situation and added a whole additional layer of anxiety to it.