Treatment info

General News, Research, and Clinical Trials
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So i had a convo with a doctor who is developing a treatment for ataxia. He said by about 2018 there will be something like a cure we can take. He is one of the head doctors working on this so i can take his word on things. Anything important comes up I will share :slight_smile: .

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So, is he developing a drug for ataxia? I’ve found great help from Frenkel’s exercises. jd

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Yes he is developing an actual drug. He is working out of California and i am in florida so all we can really do is email each other. But he has reassured me 2018 will be a promising year… Ive heard of those exercises but haven’t looked into it. Is it really helpful?

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I also live in Florida. Please keep me posted/updated. Thank you!

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Are u serious?? That would be great.

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Thanks for the update. I’m in Florida also.

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Does he wear fairy shoes and have a magic wand???

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…no just regular doctor shoes

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I’m sorry for the earlier sarcasm but like so many of us with this terrible illness,I’ve tried almost everything with little or no success and am willing to try almost anything.Please include me in any further up-dates Ron (mibadge)

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I know exactly how you feel but its better to have a “why not” attitude instead of a “yea right” . Just makes life a little smoother. But yes I will let you know any updates.

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I know that everybody that deals with Ataxia is frustrated and I’m no exception.I’m 70 yeas old and have been dealing with Ataxia for 10 years now and every day,I look for new hope.I cling to the hope that tomorrow it will come.

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I have been diagnosed for a little over a year now but ive been dealing with symptoms for many years before that. There is good resesrch being done with this disease. There is even talk of a strong treatment being made that will be released in 2018.

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"Dolo232
So i had a convo with a doctor who is developing a treatment for ataxia. He said by about 2018 there will be something like a cure we can take. He is one of the head doctors working on this so i can take his word on things. Anything important comes up I will share :slight_smile: "

Hope is what keeps us all going (no matter the disease.) but this is not the way research works nor does a legitimate researcher EVER share what you say this doc shared. It especially doesn’t work that way with “drugs”. There is not an MD (with an MD degree alone) who is anymore qualified to do primary drug research than the bartender up the street) I’m guessing what he is referring to is a paper reporting on off label use of existing drugs (or combination of existing drugs)

I’m hoping this discussion will self directed itself and calm down a bit so I don’t have to. I would quit with treatment coming up on 2018. That give a very short window of figuring out what causes ataxia when there is no apparent cause for far too many ataxia patients. Its hard to fix whats broke when you don’t know whats broke.

Incidentally there are no registered studies anywhere in Fla right now. Unless your Doc friend is confusing work being done with Friedreich’s Ataxia which is a form of MD. Erythroid-derived 2-related factor 2 (Nrf2) signaling is grossly impaired in patients with Friedreich’s ataxia. There is medication called RTA 408 activate Nrf2 and induce antioxidant target genes. Its not clear if its at all effective, but understand they are treating defective genes not Ataxia…

TJ

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I couldn’t help but notice your disbelief. Have you been in touch with Dolo23?Anything new? N

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What is the physicians name?

Thanks,
Piper

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I’ve gotcha beat! 32 years +. Lmao! I was diagnosed in 85 at FT. Benning Med Center, neurological department!

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Dolo23,

Again, What is the name of the Doctor? I would like to contact him/her or stay in the loop! I’ve been dealing with SCA for 32+ years.

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:slightly_smiling_face: Currently, lots of encouraging research goes on re various SCA’s, and FA. But as yet, there’s definitely nothing published to indicate a cure, or a way of stopping ataxia in its tracks. At the moment, recommended therapies and specific medications are often the most appropriate ways of dealing with certain challenging symptoms. www.ataxia.org notify any significant news on their site :slightly_smiling_face: xB

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Would still like to have the doctor’s name.

Thanks,
Piper

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Just a suggestion, you could send a private message :thinking: xB