My name is Irina, in July (2014) I was diagnosticated with FA, but my health situation is getting worse everytime. Are here people with FA? What treatment do you use to take?
Dear Irina, I have ataxia (diagnosed twelve years ago), but not FA. Mine has progressed also! I just want to welcome you to this group! This is a great site, with wonderful people for support and understanding! Hopefully you'll receive some responses from others with FA! My best to you, as you're not alone in your journey! ;o)
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Thank you Rose,I wish you all the best too and a wonderful 2015 :)
rose said:
Dear Irina, I have ataxia (diagnosed twelve years ago), but not FA. Mine has progressed also! I just want to welcome you to this group! This is a great site, with wonderful people for support and understanding! Hopefully you'll receive some responses from others with FA! My best to you, as you're not alone in your journey! ;o)
I’ve got FA. I used to take vitamin E and CoQ10, however I found it didn’t do much if anything at all.
I also participated in the Resveratrol drug trial carried out in Melbourne, however they saw no real improvement with it.
Hi Irina,
Go to the National Ataxia Foundation website. They are doing a Study of Cardiomyopathy in Friedreich's Ataxia Patients. The website is http://www.ataxia.org/.
Also go to this website http://mda.org/disease/friedreichs-ataxia/research and you will see some links to research they are currently doing.
Other web pages: http://mda.org/quest/friedreich-s-ataxia-drug-enters-phase-2b-clini...
http://www.curefa.org/pipeline.html http://www.ninds.nih.gov/disorders/friedreichs_ataxia/detail_friedr...
http://quest.mda.org/news/fa-rg2833-well-tolerated-increases-fratax...
I hope this helps. just keep googling Fredriech Ataxia or experiments and you may find a clinical trial you can enter. I wish you all the best.
Regards,
Barabara
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hey Serenity, I participate too in a program called EFACTS, but I don't take any drugs yet, and I don't know what to do for my mobility, I don't want to get that moment to use a wheelchair
serenity said:
I've got FA. I used to take vitamin E and CoQ10, however I found it didn't do much if anything at all.
I also participated in the Resveratrol drug trial carried out in Melbourne, however they saw no real improvement with it.
hello Barbara, Thank you for helping me,for helping us!
barb1228 said:
Hi Irina,
Go to the National Ataxia Foundation website. They are doing a Study of Cardiomyopathy in Friedreich's Ataxia Patients. The website is http://www.ataxia.org/.
Also go to this website http://mda.org/disease/friedreichs-ataxia/research and you will see some links to research they are currently doing.
Other web pages: http://mda.org/quest/friedreich-s-ataxia-drug-enters-phase-2b-clini...
http://www.curefa.org/pipeline.html http://www.ninds.nih.gov/disorders/friedreichs_ataxia/detail_friedr...
http://quest.mda.org/news/fa-rg2833-well-tolerated-increases-fratax...
I hope this helps. just keep googling Fredriech Ataxia or experiments and you may find a clinical trial you can enter. I wish you all the best.
Regards,
Barabara
Hello Irina,
I was re-diagnosted from sca4 to FA and Parkinson's. I take many meds. I no longer can walk. I have lost my dexterity in my hands. I can't move my legs and feet. I can still move my hands and arms. Currently, I take vitamins B12 and D3. I take 3000mg of keppra a day, cardiodopa/levodopa 25-100mg a day, and clonazapam 2mg a day. My scoliosis is slowly progressing and can not sense hot or cold in my extremedies. I also have nystigmas which make my eyes move on there own. I also take 3 meds to control my blood pressure.
hello,
thank you for replying me...God bless you!
branthony said:
Hello Irina,
I was re-diagnosted from sca4 to FA and Parkinson's. I take many meds. I no longer can walk. I have lost my dexterity in my hands. I can't move my legs and feet. I can still move my hands and arms. Currently, I take vitamins B12 and D3. I take 3000mg of keppra a day, cardiodopa/levodopa 25-100mg a day, and clonazapam 2mg a day. My scoliosis is slowly progressing and can not sense hot or cold in my extremedies. I also have nystigmas which make my eyes move on there own. I also take 3 meds to control my blood pressure.
What’s EFACTS? I too am trying to avoid being in a wheelchair. I feel it would take a great amount of “swallowing my pride” and also I feel (or perhaps fear) that it would be a steep deterioration from there.
Otherwise just have to keep going somehow I guess.
I do apologise if you were hoping for words of reassurance or comfort though.
hi,
http://www.e-facts.eu/html/studies/home?asgsid=48d750635589d3504f7b9a4ea654a603 this is EFACTS. I have the same feeling as you about using a wheelchair, don't be sorry :) it is ok...take care!!!
serenity said:
What's EFACTS? I too am trying to avoid being in a wheelchair. I feel it would take a great amount of "swallowing my pride" and also I feel (or perhaps fear) that it would be a steep deterioration from there.
Otherwise just have to keep going somehow I guess.
I do apologise if you were hoping for words of reassurance or comfort though.
Bump.........
It has good websites reference.