Wondering if anyone has had any experience with this supplement and its effect on Ataxia symptoms? I am currently dealing with a non genetic form of Ataxia resulting from brain surgery and radiation treatment. I have been searching, with little success, for something to lessen the symptoms. I am experiencing fatigue/weakness, loss of balance/coordination/dexterity, difficulty walking, slurred speech, difficulty writing, and I can no longer run/jog or ride a bike. Any help/comments are greatly appreciated.
I have no experience with this supplement, but I suppose it can’t hurt. Exercise and staying active will help. Has your neurologist suggested physical therapy?? They could give you an exercise routine to keep you moving. Plenty of sleep and a healthy diet will also help. There’s not much else that any of us can do to alleviate symptoms, we just learn to deal with them, and make our environment as safe as possible to prevent falls. Good luck to you!
I use an iv medicine called ivig once every 2 weeks, expensive but it does surpress symptoms . My ataxia is non genetic as well .(I have the same symptoms)
Be sure you don’t have low thyroid or sleep apnea. I have both and treatment helped fatigue a lot. Recent vestibular testing resulted in recommended Balance Therapy – something I’ve not heard of. Good food, clean diet and exercise help. Eliminate excess stress.
Thanks, I actually just had my thyroid checked and its normal, but I do have sleep apnea and I am admittedly negligent in wearing my CPAP mask every night. That I can fix but the stress is hard to eliminate. Fortunately I am still working but in a very stressful job and I am married w/two children and a dog and a cat. The stress never ends. I think my biggest stress is constantly trying to hide my symptoms from my employer and fellow employees and worrying about not being able to support my family if/when my symptoms become unmanageable and I can no longer work.
Be sure you don't have low thyroid or sleep apnea. I have both and treatment helped fatigue a lot. Recent vestibular testing resulted in recommended Balance Therapy -- something I've not heard of. Good food, clean diet and exercise help. Eliminate excess stress.
Hi Bob, I admire your ability to keep working. I have the same symptoms as you, not from brain surgery/radiation though. I was diagnosed 10 years ago with Sporadic Cerebellar Ataxia (unknown cause). I use a cane. I also have sleep apnea, and my neurologist says many people with ataxia have sleep apnea. I am faithful with using my C-Pap machine at night, because if I don't, I feel even more fatigued. I find that exercises for strength and balance help my ataxia the most. I've recently started physical therapy again (I had pt for a year a couple years ago) as I find it very helpful for my ataxia, which is progressive. I eat as healthy as possible (lots of veggies and fruit). I take a multi-vitamin, CoQ10 (300 mg twice daily), 2 fish oil caps, 1 fax oil cap, vitamin D (1000 mg), vitamin B-12 (1000 mg). I've never tried NAC, although I've read it may be helpful for ataxia. Always talk to your doctor before taking anything. My best to you..., ;o)
Hi, this is a list of vitamins and supplements that doctors have put my wife on to help protect her neurons and cerebellum from damage and potentially slow down the ataxia. It was great that she did all this because it is probably what protected her while the undiagnosed lymes disease went unchecked.
"CoQ10, Curcumin, Resveratrol, Chelated Copper, N-Acetyl Cysteine, Flax Seed Oil, Acetyl-L-Carnitine, Alpha Lipoic Acid, Folic Acid, Fish Oil. Magnesium Malate with Malic Acid "
Bob- my ataxia is also non- genetic. One of the biggest helps to me, was in going gluten free in my diet. Many ataxics are also gluten sensitive now, and that was a huge help in alleviating symptoms. I do PT and take supplements of Hops, Nervous Fatigue, and Stress- J as I also find stress a big factor in symptoms (I use all Natures Sunshine products. I find they absorb better and are overall more effective..
I used 2 b into alternative medicine before my disease became so bad, but I remember NAC is one of the most imp help withy neurodegenerative diseases b/c it makes glutathione