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Anyone dealing with Huntingtons disease
I’m waiting for DNA to come back but my neurologist says I have Huntingtons disease. Well at least I have every symptom for it. I walk like I’m drunk, my vision goes from black & white then back to color. My feet, legs, hands, arms they all hurt and do their own things. Making anything to eat I throw more out of a bowl while stirring because my hands or arm will just out of the blue decided to jerk and fling stuff. I wiggle most of the time. I have trouble swallowing and I’m ok, relatively sitting but stand I’m so dizzy and all these meds do little for the pain. Anyone have advise or medications that helps with pain? I can’t do codine. On Lyrica, Amytriptaline, Journvax right now
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When my husband was first diagnosed, after ten years of symptoms, the neurologist used three symptoms. I kept asking if he had Parkinson's because he was rolling his hand, I thought it was a version of pill rolling. It turned out it has another name, milk maid's hand, because it looked like milking a cow. The second was Jack-in-the-box tongue, when he tried to extend his tongue for ten seconds it popped back into his mouth. The third was called a "dancing gait" because he took steps forward and backwards that looked like what we called the "two step." Genetic testing confirmed this. Although there's not a definitive cure, research appears promising and they have given him treatment that helps him function. My husband has many medications that work for him, but it was definitely trial and error as everyone reacts differently to the medication. Gabapentin has helped him with the pain from his muscles tightening, so check with your doctor to see if this is appropriate for you. He takes Tetrabenazine for his tremors and jerking, again we were warned it may not work, but it turned out to be a very effective medicine for him. Sounds like you have a good doctor to work with and figure all this out. Please let me know what they find.