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Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Scoliosis
A mySMAteam Member asked a question 💭

Does scoliosis cause death

posted March 22
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A mySMAteam Member

So...I don't want to paint an overly rosy picture. The healing after my surgery took months. It wasn't a pleasant experience, the healing was very painful and I had complications that led to a… read more

posted 1 day ago
Zolgensma For Adults
A mySMAteam Member asked a question 💭

There was an article last November saying Zolgensma could be helpful for adults. Will they be doing a clinical trial on that soon? I have not seen anything further on it.

posted March 22
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I Am Not Sure If This Where To Ask
A mySMAteam Member asked a question 💭

I am hurting all over but mostly my hands. I have never had my hands hert so badly. Is there any where in the Phoenix Valley that can give a massage for this type of MD. I know this will help and does not use any drugs to relive pain. Every where I have contacted has either gone out of business or moved to a different state. I am running out of leads. It could be that it is not posable to get that type of massage in Arizona. I don't want to take drugs for pain but this hurting so bad that I will… read more

posted March 20
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What Are New Life Hacks You've Learned To Better Manage Your Life With SMA?
A mySMAteam Member asked a question 💭
posted March 20
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A mySMAteam Member

1. Listen to your body...when you have energy, do as much as you can while you can
2. Prepare for future. This means understanding how laws, savings and the political environment effects things you… read more

posted 6 days ago
List Of Questions To Ask Neuromuscular Specialist For First Appointment After Finding Sma Type 4 In Myself
A mySMAteam Member asked a question 💭

I’m scheduled for my first appt with a specialist to address finding sma in my genetic testing markers when pregnant with my child at 12 weeks. Apparently I have type 4 and looking to get some truth about what this means for me. I’m 34. Anything specific I should ask in addition to the obvious questions?

posted March 16
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How Do You Find A Physical Therapist Specialist In Neuromuscular Disorder. What Type Of Person Is That ( There Tittle).
A mySMAteam Member asked a question 💭
posted March 15
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How Do Scoliosis Symptoms Affect Your Daily Life?
A mySMAteam Member asked a question 💭
posted March 13
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What Is The Ideal Diet For A Vegetarian SMA Patient ? Any Leads Is Appreciated
A mySMAteam Member asked a question 💭
posted March 3
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Lifting Weights - Causing Or Limiting Atrophy?
A mySMAteam Member asked a question 💭

Hi all. The advice is so conflicting on the topic of lifting weights. I'm a strong type 3. I can still feel good muscle in my arms and it exists (albeit not great) in my legs. Is lifting weights ok or are we to limit our exercise to lifting our own body weight only? I am on Evrysdi.

posted February 22
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A mySMAteam Member

You can exercise. But don't overdo it. As I stated above. Aqua therapy is the best! Best of luck to you!!

posted March 8
Bipap
A mySMAteam Member asked a question 💭

Please answer, I only use the bipap device when sleeping. Is it possible that I do not use gaseous breathing in the future?

posted February 20
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A mySMAteam Member

I would ask your doctor that question. I wish you the best!!

posted February 25
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