ANNE B, MA,USA
I was so happy to find your website! As with all the others, I have been to many doctors and have had many tests. I have mentioned the symptoms to every doctor I have ever been to, and they said they didn't know what it was or ignored the complaint. Finally, I found a wonderful neurologist who took the time to diagnose the condition. He put me on a heavy course of Vitamin B-12, which didn't help. However, I am still on it. I just started on Neurontin, and it hasn't kicked in yet. The information I would like to share with you is what I think was the origin of my OT.
Incidentally, I am 76 years old. Sixty-seven (67) years ago, I had Chorea, which is also known as St Vitus Dance. At that time, doctors knew very little about this type of disease, plus there were very few medicines. Consequently, he prescribed complete bedrest which my mother complied with, and I didn't touch my foot to the floor for three months. I was also taking Phenobarbitol in varying doses. I completely lost my ability to write and other things. Chorea is Rheumatic Fever in the Nerves instead of the bones.
My mother also had Rheumatic Fever in the bones. After an auto accident, when I was handling her medical needs, she was always complaining about shaking inside her body. I reported it to every doctor she saw with no diagnosis. By the way, I think my Chorea was brought on by a strep throat which was never treated, but I stayed out of school for almost a month. I have also been diagnosed with Atrial Fibrillation, and my mother was in AFib for the last two years of her life. I consented to an interview with a resident cardiologist while I was in the hospital, and his opinion was that the AFib was caused by the Chorea.So my consensus is that OT is caused by diseases contracted in early childhood and and are manifested in later life. Also the predisposition is hereditary.
Now the good news is that my mother lived to be 96 years old, and was lucid until the last six months. I hope other OT sufferers will look into their background and see if they come up with any similarities.
Anne B., MA