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My son’s neurologic problem: walking to wheelchair

Posted by amitaale @amitaale, Jun 12, 2018

my 21 years old son all the sudden had neurological problem i met four neurology and they order lots of test all test are nagetive and doctor did not give me any answer why my son has that problem six months ago he was walking now he is in wheel chair

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jencrowl | @jencrowl | Jul 14, 2018
In reply to @monicamoran "My 17 year old daughter also had a sudden onset neurological disorder in January that they..." + (show)
@monicamoran

My 17 year old daughter also had a sudden onset neurological disorder in January that they could not find any reason for. She is now walking. She has worked very hard in physical therapy 3 days a week and aqua therapy (once she was stronger) the other 2 days a week. Repetition, Repetition, Repetition was the key to her success. However, I understand how frustrating all of the appointments with no good answers can be. We decided to stop worrying about the diagnosis and start focusing on recovery since they couldn't find anything wrong. She has a way to go in PT, Speech and School but I know she is well on her way. The key to her success was the will to get better. The stress of it all started to envelop us and we had to make a conscious decision that she was going to do what the doctors believed she wouldn't. I know how bad it feels but honestly diagnosis for us was much less important than recovering. The only thing I can't stress enough is the Aqua Therapy (when he is strong enough) and Physical Therapy immediately. The longer he is in the wheelchair, the harder his road back is going to be. Good Luck to you and I hope this helps a little.
Monica

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This sounds very similar to my 15 year old daughter. 2 months ago walked into the hospital in severe pain throughout her body, after numerous blood test, X-rays, ultrasounds, EKG’s and MRI-she left the hospital 6 days later in a wheelchair, no real diagnosis, Only telling us that this was stress induced and she needed PT and therapy. After another neurologist confirmed that same idea-I wasn’t taking that answer. We saw a rheumatologist who diagnosed her with AMPS-Amplified Muscuskeketal Pain Syndrome, with the same concept of “keep moving” with PT/aqua therapy. I’ve read the best treatment for AMPS is In-patient high intensity PT for hours everyday as well as OT and therapy. We do not have a facility in our area so she does PT 3/week, yoga 1/week and started back working out with her basketball team. She’s still in pain but learning she can push through and start to get back doing things she loves. She’s highly determined-even traveled this past week to be with her team for a tournament/played only a little but increases a bit more each day. There were tears and thoughts that she wouldn’t be able to walk if she kept going-but she did! Couldn’t be prouder!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 17, 2018
In reply to @monicamoran "My 17 year old daughter also had a sudden onset neurological disorder in January that they..." + (show)
@monicamoran

My 17 year old daughter also had a sudden onset neurological disorder in January that they could not find any reason for. She is now walking. She has worked very hard in physical therapy 3 days a week and aqua therapy (once she was stronger) the other 2 days a week. Repetition, Repetition, Repetition was the key to her success. However, I understand how frustrating all of the appointments with no good answers can be. We decided to stop worrying about the diagnosis and start focusing on recovery since they couldn't find anything wrong. She has a way to go in PT, Speech and School but I know she is well on her way. The key to her success was the will to get better. The stress of it all started to envelop us and we had to make a conscious decision that she was going to do what the doctors believed she wouldn't. I know how bad it feels but honestly diagnosis for us was much less important than recovering. The only thing I can't stress enough is the Aqua Therapy (when he is strong enough) and Physical Therapy immediately. The longer he is in the wheelchair, the harder his road back is going to be. Good Luck to you and I hope this helps a little.
Monica

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@jencrowl, welcome to Connect. Wow, your daughter's approach to the pain and mobility issues really does sound similar to @monicamoran and her daughter's. Good for her.
I'd like to ask you the same questions that I asked Monica. At the same time as continuing with PT, yoga and basketball, do you, your daughter and her health care provides continue to look for a cause? Does she continue to see specialists? If yes, which ones and what avenues or testing do you continue to explore?

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