20 Years... No Answer

If you have read any of the literature on this "syndrome" you know that it is beyond rare with around 50 diagnoses worldwide since 1967.  As my title suggests, it took me 20 years to get an answer to what was happening to me.  When I was 5, I started Kindergarten and that fall I also started have the muscle cramps in my legs.  By the time I started first grade, the muscle cramps had spread to my fingers and eventually every muscle in my body.  They were very painful.  I went to my pediatrician who said "They're just growing pains, they will go away on their own."  We (my parents and I) knew that it was more than growing pains.  We saw several different types of doctors locally then was referred to Vanderbilt Hospital.  We made the rounds through numerous pediatric specialties often hearing "That's very interesting... I have no idea" followed by good-bye.  I spent 10 years getting growth hormone shots and finally decided that I'd had enough while in high school.  As fitting with others who have been diagnosed, I am only 4 foot 4 inches.

In the past year, I have had the worst medical year I can remember.  I was in the ER for the usual (uncontrollable muscle cramps), unknown digestive problems, and some new problems.  Fortunately, the latter led me to a new Neuro doctor who took up an interest in my case.  She tried several different syndromes (Dopa-responsive Dystonia, Stiff Man Syndrome) and through both her research and my own research we came across something that had been mentioned years ago:  SATOYOSHI!

I found this site and decided to put some of my story up in hopes of encouraging others to join me.  As I mentioned above, I have had this for 20 years and have been to over 80 doctors.  I hope to meet some others with this diagnosis to see how they have coped with the ups and downs.

amwshorter amwshorter
26-30, F
1 Response Feb 10, 2010

Hello,<br />
<br />
I am 15 years old, I have a satoyoshi syndrome. sorry for my bad english, i cant spreak it so good. I live in Holland.<br />
I was 4 years old, first began it with my hear. Normally my parents told me that i had a wonderfull curly hear. But my hear fall out. Afther that i had cramps in my legs, that was terrible. It was so painfull. Now i have cramps everywhere in my body. I have used so much treatments but it was all unsuccesfully.<br />
The treatment that i have used are: carbamazapine, methotrexaat, tegretol, prednisolon. They didn't help. <br />
I am 1.48 long, verry short.. <br />
At the moment i didnt use treatments. I have no hope anymore. I feel so bad.<br />
<br />
How are you now? Do you still use IVIG treatments? Did they help?