SummerSea2's Page
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- In the online health communities I participate in, I'm:
- not really sure where I fit yet
- More about me (my health interests and reasons for joining WEGO Health)
- I have spasmodic dysphonia, a dystonia or the vocal cords. I read about neuropathy and was wondering if my speech problems are related to this. One day I was teaching my class and noticed my thoughts were present in my brain, but I could not get the words to come out clearly. I managed to teach for about four more months after my first symptoms, until my voice became so strangulated, speech was just about impossible. Doctors tried botox which worked somewhat, but the choking was just impossible to tolerate. I'm still without clear speech; mostly I whisper. The phone in impossible along with social events with background noise. About 50% of my life has been taken from me. It seems like someone somewhere must have a solution to my situation. It's so terrible.
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Welcome to WEGO Health! I'm Ellen, and I have Dystonia. Mine seems to respond to Sinemet (dopamine) so I am one of the lucky ones. I still have trouble tho. I also have generalized tardive reactions to many medicines... as do a large number of those with Dystonia. When my thyroid went quite hyper this last November, I had some issues with spasmodic dysphonia. One moment I was fine, the next my whole voice changed. Even though I knew what it was, it was scary for me. I was afraid my dystonia was still progressing. Thankfully, it disappeared when my thyroid meds were lowered, never yet to return. I hope it doesn't, but with this disease, one never knows for sure, nor do we take anything for granted.
I hope you get a chance to check out the Dystonia group as there are a few there with spasmodic dysphonia. We are a very supportive group, and there is much experience and information as well as news to be found.
So good to see you on WEGO Health! I hope we meet up again in the forum soon...!
I am so sorry for your struggles with Dystonia; it can be an incredibly tough journey. I would encourage you to visit our Dystonia community. They are an amazing group that has much to offer - both support and information. We also have many other groups to fit any interest. I would also encourage you to check them out!
Please let me know if you have any questions about how to get started or if you can't quite find what you're looking for.
Be well,
Vanessa
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