Rare Diseases Community
ataxia or dystonia??
About This Community:

This patient support community is for discussions relating to rare diseases and disorders. Some example include: Aarskog syndrome, Acoustic Neuroma, Angelman Syndrome, Behcet Syndrome, Bell’s Palsy, Canavan Disease, Carbon Baby Syndrome, Charcot Marie Tooth Disease, Chromosome Monosomy Disorders, Chromosome Trisomy Disorders, Devic's Disease, Dystonia, Ewing’s Sarcoma, Fragile X Syndrome, Immune Thrombocytopenia, Kawasaki Syndrome,Maple Syrup Urine Disease, Mastocytosis, McCune Albright syndrome, Pachygyria, Polycystic Kidney Disease, Prader-Willi Syndrome, Reiter’s Syndrome, Sickle cell anemia, Sturge-Weber syndrome, Trisomy Disorders, Usher Syndrome, Xanthinuria, Zollinger-Ellison syndrome.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

ataxia or dystonia??

Hi

I went to assessment for power chair yesterday and another one of the people at assessment asked if I had athetoid Cerebral Palsy!.

The chief lady said no it was an adult onset condition,  but this has been said to me several times.  (I wasn't born with CP)  After doing research I found the adult onset condition most often mistaken for Athetoid Cerebral Palsy is Adult-Onset Dystonia.

My first symptom was the Ataxic Gait though years ago but I've never developed the tremor (now 8yrs after onset of ataxic symptoms) and seeing the lady who assessed me (she had a noticeable head tremor) has made me wonder whether they have got my diagnosis wrong.

I wondered if you can you tell me:

if Ataxia is a symptom of Dystonia?

which type of Dystonia most closely mimics Athetoid CP?  (involuntary movements been mainly in the arms and 'milder dancing movements' rather than violently jerky & balance problems now affecting sitting as well as walking/standing)

Is it possible to have it mildly and it not get any worse? (All the videos on you tube seem to be of people with it quite severely distorting their limbs in to various positions and mine isn't like that)

Although I did notice.. usually my movements are kinda gentle rotating movements of hands (more on left),  feet do it sometimes if not in splints and boots.  But when lady was pressing against my arm and making me push against her (to test my strength for self propelling) it did seem to set my muscles off and the movements went much bigger and with more force and the lady nearly accidently got punched in the face.  I then had to press my arm tightly against my arm rest whilst sitting on my hand and stiffen my arm to regain control.  As she then wanted me to self propel across the room after sending my arms into muscle spasms!!

Does this sound like Dystonia?

Dyskinesia mentions a mixture of dystonic and athetoid type movements (amongst others) which was why I was wondering about PKD too, but I don't have it in 'attacks',  its there everyday,  constantly.

Involuntary movements would affect a persons balance and throw them off so would ataxia be a common symptom?

Its just odd how it was my first symptom years before the involuntary movements started in my arms..  my neurologist is stumped!

All help and advice appreciated!

Thanks

Kati
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Rare Diseases Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Rare Diseases Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA