Functional gait disorder

[ConcernMom]

Hi my son is 15 years old n has been recently diagnose with functional gait disorder after tons of misdiagnosis..the new challenge is finding a doctor that understands and can help him..usually when he has an attack he can't walk or stand but this latest one is all three plus he can't move his right arm..not to mention the pain n muscle spasm...I'm in south flordia willing to travel for help

[Hidden]

Hi there. So sorry about your son’s troubles - a worry for you too.

I have recently learnt, age 56, that I’m hypermobile and think this is why I’ve had an ataxic gait and other symptoms (misdiagnosed as Rheumatoid Arthritis in 2011 and recently as FND) for much of my life.

Unfortunately most neurologists diagnose anything they can’t understand as functional these days. This means they often take the neurological manifestations of other organic/ biomedical/ musculoskeletal conditions out of context and label them as belonging to a conversion disorder such as FND.

One of these conditions is a connective tissue disorder affecting the collagen - joint hypermobility disorder. If it’s hereditary or also affects his skin (velvet, stretchy skin - easy bruising) or even his organs then it’s most likely to be Ehlers Danlos Syndrome/ EDS.

So to my mind it would be worth getting your son’s primary doctor or a rheumatolgist to assess him for this if you haven’t already done so.

If he is hypermobile then this can affect everything including his movements and is important for the physiotherapy he requires to stop his joints and all connective tissue from over extending or even dislocating (which can cause severe stiffness and terrible muscle pain too)

This may or may not be relevant to you or your son but I thought I should mention it as hypermobility is most common in the young.

[christopher_cms]

schedule an appointment with a movement disorders specialist

[pickleweed]

Try getting treatment at Emory in Atlanta, GA, or Frazier Rehab (University of Louisville) in Louisville, KY. Louisville has a 1-week inpatient program for people with FMDs; they accept 3 patients per month. At the bottom of this page you can sign up for a $49 course on the Frazier program: louisville.edu/medicine/cme... .

Here is some reading material: jnnp.bmj.com/content/suppl/...

I read this about spasms: "Mirror work staring my spasm down and telling my brain it isn’t normal to do. Place a mirror down half of my body and do movements with my good side and reflect in the mirror to trick my brain into seeing my bad side as good."

Does your son have difficulty sitting upright?

[pickleweed]

Here are some recommendations for Florida:

Dr. Paul Canali

Evolutionary Healing Institute

7800 Red Road, Suite 325

South Miami, FL. 33143

305-667-8174

Dr. Rex Birkmire MD

Psychiatry, Forensic Psychiatry

Ashlawn Consulting

650 S Central Ave. suite 1000

Oviedo, FL 32765

Denise Kirsop, M.A., LMHC

Counseling, Mental Health

5971 Brick Court

Winter Park, Florida 32792

[phone] ext. 102

[moose1237]

My son who is ten was diagnosed with FND. 7 different medical doctors checked his reflexes and all said they were normal. Took him to a chiropractor and he showed me how his reflexes were NOT normal. My son walked (barely) into the chiropractor's office with a walker and walked out without it. He is pretty much completely better with just a bit of trouble with stairs yet. No more seizures either. Medical doctors are only good for setting bones in my opinion.

[Brear29]

Hi I,ve only found out I,ve got the same disorders call Gait it,s to do with diffent walking it,s a Balanced. BUT I,ve got a rare headahces what I take at the back of the neck ? I,ve had them since I lost my panter that,s nearly 3 yrs now. But I stuffers with other probs with my speak. I,VE got FND and it was my dog Jack who deted when he was 1yrs but now he is 4yrs over here in Scotland I can get psho from the Stroke Unit. They told me and my 24 son that his mother has FnD BUT i TOLD MY DOTCOR he was shock it,s not cure .I hope your son gets the best teatemment.