My husband was diagnosed with Type 2 diabetes in 2003. Since he was 45 years old, we just accepted the diagnosis, and starting dealing with all the diabetic issues. Several years later, he started having some issues with shaking....mostly in his hands. Again, we just assumed it was either something having to do with diabetes, or just old age creeping up on him, We knew his mother had some Parkinson's issues, but never made a connection. Over the years, the shaking got progressively worse, and his eyesight started getting worse (again, diabetic issue). His walk changed to a kind of shuffling gait. Last May, I got scared to death when he was using a knife in the kitchen, and was shaking so bad, I finally convinced him to see a neurologist. After numerous tests (blood work, MRI, electric impulse, etc, etc.) the neurologist decided that it wasn't Parkinson's, but SCA. We did genetic testing to try and determine the type, but that didn't give much info...just ruled out which ones it wasn't. After all these tests, the neuro said he wanted him to go get a 2nd opinion, so we made an appt, and unfortunately, due to a mix up, none of the records from the 1st neuro made it to the 2nd neuro by the time of the appt, so nothing was resolved at that point. In the meantime, I finally convinced my stubborn husband to see and endo for the diabetes (he had been going to his PCP all this time), She immediately took him off the pills he had been on for 12 years, and did a whole blood work up. Just found out that his GAD levels are off the charts! Normal levels are about 0-5......his is over 250! So now we find out he is Type 1 diabetic, and have to change the way we have been dealing with his diabetes after all these years! And after doing some research on GAD (both my sister and I), we found out that GAD levels and SCA are related! I can't help but think if the GAD test had been done sooner, then maybe we wouldn't be dealing with this SCA! We go to the 2nd neuro on Thursday, and believe me, I will be armed with all his test results from the 1st neuro AND the endo. I am very angry and upset at the moment, but know that until we see the 2nd neuro, nothing can be answered, Has anyone else experienced this type of issue?
Joanie, that is truly disgraceful, it beggars belief that this sort of thing happens.
In 1991 I was obliged to take epilepsy medication because I’d had a seizure in my sleep, and needed to drive. Eye problems were one of the side effects listed. I ended up with Iritis in both eyes and permanent damage. The Neurologist at the time just dismissed my concerns.
By 2000, dizziness and eye problems worried me so much that I had an MRI, this showed some distortion of the cerebellum. Despite me describing worrying symptoms, the Neurologist (a different one) said you’ll just have to learn to live with it, there’s nothing we can do. I suspect that he could have told me then that I had Ataxia.
By 2011 I’d almost lost the plot due to symptoms, my PCP told me she had 'tested for everything’
and could find nothing wrong with me. I find it unforgivable that there was lack of care at this point. It seems obvious that the results from the MRI should have pinpointed the problem, she didn’t bother to make sure I fully understood.
I started having falls and was sent for a Tilt Table test, this involved lying down for a required length of time and then being brought to a standing position. I collapsed, my legs wouldn’t support me, they felt like jelly. What is more disturbing is the fact that I felt drunk, I couldn’t stop laughing. Another MRI (yet another Neurologist) confirmed Cerebellar Atrophy, I was taken off the epilepsy medication.
I hope your husband is seen by a Neurologist who specialises in Ataxia 
xB
Beryl,
I can't believe you have some similar issues with no one actually trying to figure this stuff out! We are seeing the 2nd neuro in the morning. When he saw Steve the first time, of course since he had none of the previous test results, he really couldn't make a diagnosis, but he also said that he thinks it might be Parkinson's related, with some SCA symptoms as well. So hopefully, we will get some answers tomorrow! We both liked him...he is younger than I expected, and he really took his time, even though he had nothing to go on except visual tests (walking, nose to finger coordination, etc.) He and his partner are very well known in this area, and they have A+ ratings from patients, so am confident he knows what he's doing. And the 1st neuro is the one who told us to go there!
Beryl Park said:
Joanie, that is truly disgraceful, it beggars belief that this sort of thing happens.
In 1991 I was obliged to take epilepsy medication because I'd had a seizure in my sleep, and needed to drive. Eye problems were one of the side effects listed. I ended up with Iritis in both eyes and permanent damage. The Neurologist at the time just dismissed my concerns.
By 2000, dizziness and eye problems worried me so much that I had an MRI, this showed some distortion of the cerebellum. Despite me describing worrying symptoms, the Neurologist (a different one) said you'll just have to learn to live with it, there's nothing we can do. I suspect that he could have told me then that I had Ataxia.
By 2011 I'd almost lost the plot due to symptoms, my PCP told me she had 'tested for everything'
and could find nothing wrong with me. I find it unforgivable that there was lack of care at this point. It seems obvious that the results from the MRI should have pinpointed the problem, she didn't bother to make sure I fully understood.
I started having falls and was sent for a Tilt Table test, this involved lying down for a required length of time and then being brought to a standing position. I collapsed, my legs wouldn't support me, they felt like jelly. What is more disturbing is the fact that I felt drunk, I couldn't stop laughing. Another MRI (yet another Neurologist) confirmed Cerebellar Atrophy, I was taken off the epilepsy medication.
I hope your husband is seen by a Neurologist who specialises in Ataxia :) xB