I was recently diagnosed with Ataxia recently. I have had a brain MRI which was fine as well as an EEG so I was sent by my neurologist to a movement disorder specialist who said it was Ataxia but wants to dig deeper to look for the reason. I am having a cervical MRI soon and had a ton of blood work done. What tests have you had and how did the cause of your Ataxia impact the treatment plan?
You might want to look into Gluten Ataxia since your MRI was normal. Also, blood tests [genetic] can be expensive.
Thanks. Not sure but one of the blood tests might be for gluten sensitivity. I will check.
My diagnosis of Ataxia is from Dilantin, which I took for many years for epilepsy. It is degenerative so there is no treatment plan except to keep seeing a movement disorder specialist and be careful. Oh and stay away from Dilantin.
I had CT scans, MRIs at different hospitals. all of which showed Cerebellar Ataxia.
There doesn’t seem to be any medical upside to this. I will get my attitude straight but right now I am feeling defeated which is not my usual response to things. Knowing there are so many of us out there is nice.
oh trust me I feel defeated all the time. you just have to adjust because theres no denying it.
I am working on it. Thanks.
I have endured a bar-age of testing. I’ve had all kinds of heart tests. I’ve had MRI’s from my head to my butt! I’ve had genetic testing (free in Ontario Canada thankfully) and other blood tests. Inner ear testing. Urinary tract examinations. Had every or-face poked and prodded (some not so pleasant). Had CT scans. I’ve tried eliminating certain foods from my diet in hopes to discover some sort of intolerance, including gluten. I have various movement and coordination exams every visit conducted by my neurologist. …(Sigh). Defeated or deflated? Finally diagnosed with MSA. There really seems to be no specific treatment, only to alleviate some of the symptoms of MSA. But as time progresses symptoms don’t seem to respond to therapies and/or medications. Hopefully you find a cause for your ataxia soon and it can be fixed. Many of us can’t be fixed (Yet). Everyday I step out of bed wondering if I just had a bad dream, then reality sets in, a new day begins dealing with the same ol’ crap! Try to remain positive though. Every time I visit the movement disorder clinic, I take a look around the waiting room and think…I am so lucky!
Thank you. Your post was powerful and I appreciate your frank assessment of what you have been through. I guess we just have to keep a good attitude.
Typically ataxia is first diagnosed by by gait (wide. unsteady stance and full foot contact when walking rather than heal to toe). An mri of the cerebellum typically follows, and in my case found nothing but normal age related shrinkage. The next stop was a neurologist who confirmed the diagnosis of ataxia by observation (gait, feeling in the foot or lack thereof, the ability to hold a full glass of water without spilling it, testing of reflexes and upper body co-ordination, and vision for nastygmus and overshoot. Medical history is reviewed particularly looking for family history and other problems commonly associated with ataxia (in my case frequent urination, bradycardia, balance, gait and hammer toes) all of which appeared around the same time by balance problems commenced. Test for vitamin b12 and vitamin e are also typically given as deficits of these vitamins affect some ataxias. The next step is genetic testing which is often inconclusive as has a wait time of about two years where I am.
I am told by rehab that most the 20 or so patients they follow will never get a definite diagnosis as to the type of ataxia they have. The indications for mine at present are late idiopathic (unknown cause) ataxia and I may never find out more.
Fortunately the progression of my ataxia has been slow or non-existent since diagnosis and the neurologist is naturally puzzled. I observe a strict and strenuous exercise routine, both weight training and cardio 5 days a week, and there is plenty of evidence that exercise is helpful.
I am fortunate that my ataxia allows be to follow a strenuous regime but any exercise that can be tolerated is worthwhile. There is a certain plasticity to the brain and after using my walker for 6 km. walks I notice a significant improvement in balance although without regular practice the benefits don’t last.
Thanks. So far no cause has been uncovered for me either. I had tons of blood work including looking for heavy metals and my blood work has all been fine. I have worked out with a trainer for the last 4 years which I am sure has slowed the progression. My symptoms increased exponentially however in the past year which so my doc is thinking about genetic testing. I am okay with that if my insurance will cover it. I’m not sure it matters if we don’t find a cause for the ataxia. We need to empower ourselves and find out what works for us. I’m working on that.