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amitaale
@amitaale

Posts: 2
Joined: Jun 12, 2018

my son sickness

Posted by @amitaale, Tue, Jun 12 10:33am

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

REPLY

all those test was done in diffrent hospital i don't whom to talk at mayo cilinic

Oh I am so sorry. Be careful. Doctors think they know and can fix anything. My son was told he had 2 months to a year to live. We ENT to 5 Drs for opinions. Ended up in Chicago where they operated on his scull to take what they said was cancer. Pathology CD not find any cancer. Dr told them. Try again.2nd time,still nothing. A totally unnecessary operation. Hurt so many people. After we got him home, he had a grand Mal seisure from the tampering with his brain. A yr later and he. Is better than ever and strong. But does not trust Drs.

Hello @amitaale I sm Scott and while I am sorry to read of your son’s health problems it is nice to e-meet you here. My wife had neurological medical problems and I would like to say do not lose hope!

It took her doctors time to find what her problem actually was and it was not identified until she went to the neurologists at Mayo Clinic in Rochester. But they finally did!

They have a world class reputation and see all kinds of medical challenges.

This is a link to the neurology area and has lots of information.

https://www.mayoclinic.org/departments-centers/neurology/home/orc-20117057

I wish you continued strength, courage, and peace.

Hi @amitaale
It has been a little while since you wrote about your son's illness. Were you able to get in touch with the neurology department at Mayo Clinic? How is he doing? How are you doing?-

Liked by 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

@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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Try ECO-THERAPY. Take a hike. (After being in a coma for five weeks from a broken neck- the PTs helped me take a short walk outside).

Face the sun – even if in a wheel chair (which I was in for months) get outside. “

“Nurture”-Nature. Feed the birds, or even wet pets – wet- pets. Grow something
—————

Maybe write something. Gratitude for the new normal.
It took me over a year to recover. Neuroplasticity is Amazing! Do what the therapists suggest.

I have great compassion.

Shared files

How the Best Handle Stress (How-the-Best-Handle-Stress.pdf)

Liked by monicamoran

@oregongirl

Oh I am so sorry. Be careful. Doctors think they know and can fix anything. My son was told he had 2 months to a year to live. We ENT to 5 Drs for opinions. Ended up in Chicago where they operated on his scull to take what they said was cancer. Pathology CD not find any cancer. Dr told them. Try again.2nd time,still nothing. A totally unnecessary operation. Hurt so many people. After we got him home, he had a grand Mal seisure from the tampering with his brain. A yr later and he. Is better than ever and strong. But does not trust Drs.

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Many doctors are ignorant when it comes to medicine.It's become all about paper work and less about patient care. Medicine is BIG BUSINESS! They no longer care for the human man and the hardships we suffer. It's all about money. I trust veterinarians more than I trust doctors. Vets going into animal care because they love animals. Doctors, not all, go into medicine to get rich. Plus veterinarian Medical School is harder than Medical School. I trust my life with a veterinarian more than I do a regular doctor. Beware of doctors. They can be your worst enemy. I've met many and I'm a RN!

@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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Great advice. Ah the sun… I MAKE Haley come outside and sit in it no matter what rain or shine every day. I agree. ECO-THERAPY. Love that.

Hi @monicamoran and welcome to Connect. I like your words of encouragement for @amitaale as she tries to untangle what is going on with her son.

Monica, I find your daughter's story remarkable. What a strong girl she must be, and she's clearly benefiting from your support and disposition. Focusing on the symptoms and rehabilitation seems to have helped you both come out from under a cloud of doom, and to take control. At the same time, 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?

@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

Jump to this post

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!

@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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