PSP Association

Balance and Falling Problems

Hello all my 16 yr old daughter woke up one day in July "17" and had balance problems on whole left side. This was where she was unsteady and kept falling towards the back and side. She got to the point where she had to use a cane, then walker, now a wheelchair when out. She has been to specialist after specialist and still NO diagnosis. She does not get better she gets worse, and now is falling more. It came to a point where her physical therapist said she couldn't see her because of her being a risk to the facility. Also she had to be taken out of school and put on the Home and Hospital Program (where a teacher comes to the house and teaches her for 3 hrs a night 3 days a week. She is a Junior and is not getting the correct schooling, because of this condition. NO one seems to know what this can be. She has had labs for MS, Lyme's Disease, diabetes, etc. She has also had MRI's of the brain, c-spine, l-spine and t-spine and a nerve conduction study test. She went to her ENT and he tested her and nothing. EVERYTHING came back normal, so they say. This is so heartbreaking to see her go through this. She is starting to get depressed. It's hard for me to hold her up and help her with walking. She did have a Achilles tear repair back in October "16", but was fine once she came out of the boot.

Any advice would be great. Thanks in advance

Michelle H.

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Hi Michelle, that is a real stunner! How can there NOT be something the medics can find wrong that are causing your daughter such severe problems!

I would not for a minute imagine she has PSP! But understand why you signed on here!

Do you have a neurology specialist? I would jump up and down for more tests for rarer diseases and conditions, whatever they may be, so that you have a prognosis and plan of attack.

I know how helpless you feel and how MAD! that they can't find anything! My grandson had symptoms of Guillane-Barre disease and spent 6 months paralyzed in a wheelchair, but they just said he had complex regional pain syndrome. He was compelled to stand up 6 months on by a voice in his head (God) at a prayer meeting, and did so!

This sounds so weird and unbelievable! But that is how it was! He still has muscle weakness and a sore hip, but is on his feet and making waves through life. He is now 19.

It just goes to show that for some things there does not seem to be a fathomable reason!

None the less, keep looking for symptoms that fit! Don't be fobbed off! Look for a specialist who can think outside the square and maybe can make sense of her symptoms.

Has she been otherwise healthy? Normal weight gain? Good appetite? Good bodily functions? Good mental health?

If you want to talk further, send me a private message, or I can contact you.

Hugs

Jen xxx

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That's heartbreaking. I have never heard of anything like it. I'm so sorry.

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I just read a book called Brain on Fire - give it a google , you may get an idea😕

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A perfectly healthy young journalist was stricken in such a way - all tests were coming back normal. Inflammation was involved as I recall.

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Some kind of encephalitis - there are many!!!???

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Did she have a lumbar puncture ?

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No she hasn't.

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It took a year and a half, many tests plus a new neurologist who was a movement specialist to get a diagnosis of PSP for Larry. I don’t know where you are. If you are near teaching hospitals or major medical centers trying those would be the way to go. A movement specialist might be a good idea.

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About a year ago there was an article in the UNIVERSITY OF REDLANDS (Private college in Redlands, California) of a student attending there who had been DX with Parkinson's (PD) in her high school years. As far as I know there is no "sure" test for PD. When someone as young as your child exhibits negative neurological symptoms it's difficult to believe that it could be or might be or is..................

My son (we both live(d) in Los Angeles, CA, USA) got symptoms of PSP at the age of 52, DX as PD, and re-diagnosed as PSP January, 2017. He died at age 55 May 4, 2017.

There are huge leaps in findings for neurological diseases, but you need to also find a knowledgeable NEUROLOGIST (usually working within a research university hospital).

I wish you and your daughter well. I know the anguish of a mother with a child ill from the unknown.

Prayers and luck!!! Margarita

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Dear mdmom,

I have to agree with everyone especially Margarita. Tests, tests, and more tests! However, my husband may have never been diagnosed it it weren't for....me...

When I posited PSP to the dr...he did a quick test that only required my husband to follow an object with his eyes. When he failed this test, the diagnosis was pretty much made. My husband however was 53 ... probably was having effects on him as early as his mid 40's .

Seeing that your child is in her teens (and such a diagnosis isn't usually made this early in life)....I would get more tests but this time with you being more in the lead. I'm not saying you are not, but you might look where dr's have not and then go ahead and tell them to "look there!"

I pray your daughter is relieved of her malady...in the mean time make sure she has emotional support....get her some networks where the kids are suffering a debilitating disease...who knows, maybe the answer will be found there....She needs to talk and scream and cry to others who are right there with her....

You know what? you need the same thing.... and here you are....

Please remember that another good network is that of God....both of you can scream and cry and beseech Him.....and for whatever reasons these things are happening to you, know that He really is there.......

((many prayerful hugs to you and yours))

AVB

Cast your burden upon the Lord, and he shall sustain thee. et el... Psalm 55:22

Let us not grow weary in well doing (in anything); for in due season, we shall reap, if we faint not....Galatians 6:9

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Thank you so so much. I am not quitting. I will get answers. I know with God's help we WILL get through this and get answers.

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Good luck and do well

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Please check out the encephalitis(?) possibility if you haven't - there is something that gets young women more than men that can be helped. An inflammation treated with steroids - sorry, but why not try any idea!?!?

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I agree with honjen43

A big hug.

Luis

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Just saw this in a BBC news story and thought of your daughter.

"It started with what I thought was flu that just wouldn't go away. I'd get extremely tired and I began to fall asleep while driving home from work," he says. "I would feel intense pain in my legs and I collapsed a couple of times when I was walking. It was more than a regular illness."

Two years and countless hospital visits later, Van Huffel was diagnosed with myalgic encephalomyelitis, also known as ME, or chronic fatigue syndrome - a condition that often leaves people feeling permanently exhausted and incapable of even the simplest daily tasks.

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How is your daughter? Was a diagnosis determined? It has been approximately two months since you first posted.

I have been keeping you (as one mom to another) in my prayers.

Margarita from Los Angeles

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