My original neurologist diagnosed me with ataxia, but MRIs, blood work and numerous tests failed to show a ,cause and after 2 years I decided to see a new neuro at Yale's movement disorder clinic.
He said it didn't look like I had ataxia and diagnosed me with primary weakness. I pick my foot up when I walk which he thought looked compensatory. He ordered an EMG, which turned out normal.
He then ordered MRI's of my cervical and lumbar spine, which I had done on Feb. 28th. Yesterday he called with the results, saying he'd found the cause of my problems. I have lumbar stenosis, forminal narrowing at L 4-5, which traps the nerve, causing my leg weakness.
He's referring me to an orthopedist, although he said they often refer to neurosurgeons as well. I feel better having a reason for my awkward gait but don't want to get too optimistic. Anyway, I wanted to share this for anyone it might help. My first neuro did MRIs of the brain but not the spine.
Thanks for this post.My 'son-in-law' has 'lumbar stenosis' and suffers immense pain but walks normal..He's had recent surgery and now the long road of recovery is causing great depression and isolation..I hope he becomes 'normal' or improved real soon..So best wishes to your-self in hopefully finding a treatable cause for your condition..
Hi, I was diagnosed with Late Onset Ataxia Syndrome 6+ years ago, exhibiting the more usual symptoms - poor balance, lack of co-ordination and consequent 'dodgy' gait. In November 2012 I was examined after constant back pain & numbness and a lumbar stenosis was identified. Nasty when combined with the Ataxia problems! An epidural injection was tried and this provided some relief but only for a couple of months so was not worth repeating. The next option was surgery, a procedure called 'decompression' of the joints L4 & L5 and took place in November 2013. It was explained before the operation that 90% of those having the operation could reasonably expect, on average, 9 years of being pain-free.
14 months later my back is good, with none of the previous problems. My Ataxia has progressed a little though very slowly and is bearable as nothing actually hurts.
I wish you luck, and would advocate asking the Doctors about the two options above. They can only say no and you can at worst ask why not!
Dear Moosehill, my first Neurologist performed electriod and needle testing on my legs & determined that my balance & gait issues weren’t due to my legs not “functioning” properly. I was then referred to a Parkinson’s Neurologist who ordered an MRI of my brain & from there diagnosed my Ataxia, based on definite spots on my cerebellum. It was compared to two MRI’s for strokes (2002 & 2008). Although I have some back pain, I hesitate to tell the doctor because I also have Paroxysmal Atrial Fibrillation. My health issues literally go from head to toe but the Ataxia has the most
daily impact on my life. I have never been told if it is a disease or a syndrome and nobody I’ve talked to outside of this support group has ever heard of it.
I guess it’s better to have a definite diagnosis, but when none of your friends or family has heard of it, the severity of Ataxia is lost on them.
Thanks for sharing you story Moosehill & take care!
Hi, I was diagnosed with Late Onset Ataxia Syndrome 6+ years ago, exhibiting the more usual symptoms - poor balance, lack of co-ordination and consequent 'dodgy' gait. In November 2012 I was examined after constant back pain & numbness and a lumbar stenosis was identified. Nasty when combined with the Ataxia problems! An epidural injection was tried and this provided some relief but only for a couple of months so was not worth repeating. The next option was surgery, a procedure called 'decompression' of the joints L4 & L5 and took place in November 2013. It was explained before the operation that 90% of those having the operation could reasonably expect, on average, 9 years of being pain-free.
14 months later my back is good, with none of the previous problems. My Ataxia has progressed a little though very slowly and is bearable as nothing actually hurts.
I wish you luck, and would advocate asking the Doctors about the two options above. They can only say no and you can at worst ask why not!
On the brain MRI your 1st neurologist must have seen some spots to diagnoze you with ataxia. My 1st neurologist did several tests and an MRI of the cerval/lumbar spine and sent me away telling me there was nothing wrong with me.I told him: you can see that I walk strange can't you. The tests showed nothing wrong was his answer. For a 2nd opinion I went to an Academic hospital. There they made an MRI of the brain and I was immediately diagnozed with ataxia. I also had an EMG there and bloodtests which came out negative. So the neurologist diagnozed me with ILOCA (idiopathic late-onset cerebellar ataxia) in other words: they don't know where it comes from. So the tests like in your situation don't NEED a cause. The neurologist showed me the results of de brain MRI and pointed out the spots on the cerebellum which were degenerating i.e. dying and therefore a shrinkage of the small brain, called ataxia.
You obviously have a problem with your spine, which I don't..but does that rule out ataxia? The results of your brain MRI and the diagnosis of your 1st neurologist..I would not shove them aside just like that. It's best to KNOW what you have because it's the not-knowing which keeps gnawing, spinning around there in your head. Draining you of all energy which is pretty poor as it is for all people with ataxia. Waste of energy is something we cannot afford. So take care, try to find things you really like to do, keeps your mind off things. Stay positive, reach out to the CAN DO's. Don't linger on the things you can't do anymore..that will only sadden you and will get you nowhere. Hugs from Holland, Elle.
Thanks Elle, for your reply. My first neuro diagnosed me with ataxia but my brain MRIs showed no spots or lesions. He didn't know the cause of my ataxia. I brought a disc of those MRIs to a second neuro at Yale who also said they looked fine. On observing my gait though, he didn't think I had ataxia, He thought it looked more like muscle weakness. I lift my foot when I walk and it slaps the floor. He demonstrated an ataxic walk for me, and it's different than mine.
You make a good point about MRIs. Second neuro had only the reports, not the actual films from my first neuro. He really wanted to see them because, he said believe, me, mistakes in reading happen all the time. I brought him the disc, he put 2012 and 2014 side by side and said my brain is fine. When he ordered MRIs of the spine I asked if it mattered where I had them done. I usually go to my local community hospital. He said if I went to Yale, he could guarantee that my results would be read by a neuro-radiologist but didn't know if that was the case at my local hospital.
In your case, having the MRIs redone made the difference in your diagnosis. The first didn't show, the second did. That's important for people to know. In my case, although my new Dr. didn't order new brain MRIs, he did have a normal one from 2014 and ordered cervical and lumbar spine MRIs, which he says is the source of my problem. The narrowing of the spine impinges on the nerves to the legs. Doesn't explain my clumsy left hand issue but I do have arthritis of the neck.
I do keep busy. I volunteer as an English as a second language tutor and love it. I'm going to Hawaii in May. I'm grateful for the mobility that I have and hope and pray that my new doc has found the reason for my troubles. He's given me a little ray of hope and I eagerly await his referral. I found a Yale Spine Center near me with an inter-disciplinary practice of neurosurgeons and orthopaedic surgeons. Think I'll email him tomorrow asking to be referred there.
Interesting. We should remember that "ataxia" is really a shorthand description of symptoms (eg., balance, gait, et. al.). We all know about symptoms, but assigning a "cause" is hard to come by. And then we get to the very difficult: how to treat and/or correct the underlying cause. The medical practitioners d o NOT have a protocols for treatment. They cannot do research. So we experiment on our own. At least you have a possible cause. I have not heard of your cause assignment, but good luck. Thanks......Silky
I didn't have my MRI's redone actually. The 1st neurologist only ordered an MRI of the spine. Obviously didn't even think of one for the brain..and then sending me away with the message: nothing wrong with you. Kinda sloppy for a neuro, no? The 2nd neurologist (Academic Hospital this time) had an MRI of the brain ordered, that's when the ataxia was diagnozed.
You are keeping yourself busy in the way you like: GOOD:)
Wishing you a great time in Hawaii.
MooseHill said:
Thanks Elle, for your reply. My first neuro diagnosed me with ataxia but my brain MRIs showed no spots or lesions. He didn't know the cause of my ataxia. I brought a disc of those MRIs to a second neuro at Yale who also said they looked fine. On observing my gait though, he didn't think I had ataxia, He thought it looked more like muscle weakness. I lift my foot when I walk and it slaps the floor. He demonstrated an ataxic walk for me, and it's different than mine.
You make a good point about MRIs. Second neuro had only the reports, not the actual films from my first neuro. He really wanted to see them because, he said believe, me, mistakes in reading happen all the time. I brought him the disc, he put 2012 and 2014 side by side and said my brain is fine. When he ordered MRIs of the spine I asked if it mattered where I had them done. I usually go to my local community hospital. He said if I went to Yale, he could guarantee that my results would be read by a neuro-radiologist but didn't know if that was the case at my local hospital.
In your case, having the MRIs redone made the difference in your diagnosis. The first didn't show, the second did. That's important for people to know. In my case, although my new Dr. didn't order new brain MRIs, he did have a normal one from 2014 and ordered cervical and lumbar spine MRIs, which he says is the source of my problem. The narrowing of the spine impinges on the nerves to the legs. Doesn't explain my clumsy left hand issue but I do have arthritis of the neck.
I do keep busy. I volunteer as an English as a second language tutor and love it. I'm going to Hawaii in May. I'm grateful for the mobility that I have and hope and pray that my new doc has found the reason for my troubles. He's given me a little ray of hope and I eagerly await his referral. I found a Yale Spine Center near me with an inter-disciplinary practice of neurosurgeons and orthopaedic surgeons. Think I'll email him tomorrow asking to be referred there.
