Is anyone taking dalfampridine? I just changed 2 months ago from diamox. Do you find it more helpful? And, are you having any side effects?
I’ve seen Dalfampridine mentioned in other ataxia support groups. Some people have said it was particularly helpful with Nystagmus.
I started Dalfampridine about three weeks ago. Never tried Diamox.
The Dalfampridine is already helping with my nystagmus. I no longer get dizzy and nauseated when I look up or down. I am so thankful to have those symptoms relieved!!
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I have Downbeat Nystagmus myself…it’s really good to know you’ve had such an improvement. So far I haven’t tried medication.
I have been taking this for about 3 months. Have noticed some improvement. Every bit helps.
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Good to know this helps
Are you diagnosed with a specific type of ataxia.
Which symptoms have improved.
SCA27B. Walking a bit better but still use rollater and cane for short distances. Am hopeful that Troriluzole from Biohaven, Ltd will be approved by FDA 3rd quarter this year.
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Did you know…there is a specific support group on Facebook ..for SCA27B
I joined because …I’m Idiopathic and my symptoms are similar.
This is a link from the group.
Our next scheduled SCA27B Zoom meeting will be on WED, July 30th at 1:30-3:30 EDT (US/Canada). This should allow our members from Europe to attend, but I know this will not work for those of you in Australia & New Zealand. I will make sure to send out the recording to everyone.
We will be hosting a webinar presented by an international genetic testing group (CeGaT). This will be a great opportunity to learn about how you can get family members tested for SCA27B no matter where you live. The presenters will be coming to you from Germany and the United States
If you’d like to join …search Facebook for..
Nye / Darby Ataxia [SCA27B] info
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