@senoraglvgmail-com
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Giselle Vargas replied to the topic Ibudilast (Ketas) in the forum Research Topics 2 years ago
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!
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Giselle Vargas replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 2 years, 4 months ago
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]
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Giselle Vargas replied to the topic Home renovations and ALS in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 5 months ago
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? -
Dagmar Munn and
Giselle Vargas are now friends 2 years, 5 months ago
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Amanda and
Giselle Vargas are now friends 2 years, 5 months ago
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Giselle Vargas replied to the topic Canada Approves New Patent Covering Ibudilast’s Use for ALS Treatment in the forum Research Topics 2 years, 6 months ago
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?
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Giselle Vargas replied to the topic Lyme Disease vs ALS in the forum Diagnosis Information and General Questions 2 years, 6 months ago
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
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Giselle Vargas replied to the topic NPR story on AMX0035 in the forum Research Topics 2 years, 6 months ago
Hi Dagmar,
Is it possible to post a link to the ALSA petition to expedite access to AMX0035?Such exciting news!!
Giselle
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Giselle Vargas replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 2 years, 6 months ago
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] -
Giselle Vargas replied to the topic Exercise and ALS in the forum Living With ALS 2 years, 7 months ago
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
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Giselle Vargas replied to the topic How long did it take for an ALS diagnoses? in the forum Diagnosis Information and General Questions 2 years, 8 months ago
Hi John, Sorry you are dealing with this! Do you live near NYC or a city with a good ALS clinic?
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Giselle Vargas replied to the topic How long did it take for an ALS diagnoses? in the forum Diagnosis Information and General Questions 2 years, 8 months ago
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]
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Giselle Vargas replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 2 years, 8 months ago
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]
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Giselle Vargas replied to the topic Ashwagandha (aka Withania Somnifera) Supplementation in the forum Research Topics 2 years, 8 months ago
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?
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Giselle Vargas replied to the topic Ashwagandha (aka Withania Somnifera) Supplementation in the forum Research Topics 2 years, 8 months ago
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
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Giselle Vargas replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 2 years, 8 months ago
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]
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Giselle Vargas replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 2 years, 8 months ago
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]
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Giselle Vargas started the topic Respiratory onset? in the forum Diagnosis Information and General Questions 2 years, 9 months ago
My husband’s first and most salient symptom has been shortness of breath due to weakening diaphragm and torso muscles. Has anyone else had a similar experience? Everyone else seems to be bulbar onset or limb onset. I know there is a small segment that is respiratory onset but I have never seen anyone post about this. Thank you!
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Giselle Vargas posted an update 2 years, 9 months ago
I’m not sure if I am writing this in the correct place. My husband was diagnosed in November but his symptoms started with difficulty breathing which seems very unusual. He cannot breathe laying down and needs a non-invasive ventilator to sleep or recline at all. It seems his diaphragm and chest muscles are being affected first. I am wondering i…[Read more]
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Giselle Vargas replied to the topic A fast way to win ALS not totally but … (part 1) in the forum Research Topics 2 years, 9 months ago
Hi Igor,
Your ENGLISH is fine. What is Power Plate? Curious.
Thanks, Giselle - Load More