He doesn't realize that he is stumbling or that he is slurring his words. Don't most people with ataxia realize they have it?
Here is a brief history: I noticed the ataxia back in early Jan. of 2012. At that time he was stumbling, slurring his words and had a couple bouts of delirium. I took him to a neurologist who ordered a MRI which came back normal. The doctor believed my husband was abusing drugs and almost didn't order any more testing. I talked him into doing some blood work and that came back with very low B12 and low protein. My husband was started on weekly B12 shots and the episodes went away except for brief spells that lasted just a few hours... until a few days ago.
His symptoms are ataxia, exaggerated facial expressions, slurring, extreme hunger (he eats constantly), a periodic sharp pain in his ear/jaw, restlessness, insomnia.
He is still going to work everyday. I assume he is not having all these symptoms at work. No one else has noticed his strange behavior except for our neighbors who thought he had been drinking (he does not drink).
He does have a doctor appointment in 2 weeks. Would it be helpful to take him to the ER during a spell? I am not sure what to do. He gets angry about having medical tests because he is convinced that there is nothing wrong with him.
Our daughter (23 years old) has had RAS (Reflex anoxic Seizures), a vagal nerve disorder since she was a baby. Her episodes are slowing down thankfully as she gets older. Now I am wondering if this is somehow genetic and connected to my husband's recent ataxia.
Thank you for any insight. I'm feeling pretty stressed right now.
I knew that I had it (ataxia) but of course it ran in the family,on my mothers side.I fall quite often,but you gotta play with the cards that were dealt you!
I didn't realize it - and, I admit, still resist seeing some of the symptoms! When I was diagnosed it took my martial arts instructor to get me on the path to figure out what was wrong - she saw things a lot more than I did. Mine isn't episodic, so the neurologist could see it on the MRI. If it is episodic, I'm not too sure what the causes could be - I would think a video would be a good idea, and if a doctor can see the symptoms firsthand that would help!
Hi Victoria, I have Sportatic Spinal Cerebeelar atatia. Which really means the Dr's don't know how I got it. I think it's because of being around chemicals/toxins being a hairstylist for years.
Ataxia kinda snuck up on me. At least I didn't really notice but other's did. I think I started to wounder when I started having to pick up my legs to get into the car or just to put my sox's or shoes on, but I thought I was just getting older and it was no big deal until I went in for having problems with my shoulder to a nurologist and he asked me to sit on his exsam table. Then he saw me have to life up my legs one by one to take off my shoes. He asked if I always did that, and I said yeah that's normal. He said it wasn't. That is when I started being tested. And was tested for quite a few years and they came up with all sorts of wrong things. I finally got a diagnosis (classification) going to the Mayo Clinic in Minnisota.
I triped only once in a while but thought I was clumsy at time or just didn't pay attention.
I have a husband that doesn't like to see Dr's too, or ever think there could be anything wrong with him at all, so I get that loud and clear how your feeling. And I'm sorry that your going through everything. :0) I really think that eventually he will have no choice but to think something is wrong if symtoms get worse and try and find out. Unfortunatly I don't see how you can make anyone do anything. That is unless they want to do it. Thank God he has you in his corner to be there when he will need you! Good luck though. I definatley can hear your stress with this, and I think it's totally understandable.
Thank you for all the replies! I'll be reading more old posts on the forum to learn more and I'll be sure to post any test results we get on my hubby.
Hi Victoria, From my experience, there is nothing anyone can do for ataxia.Except help when you can. He might not admit it now. But its only a matter of time that he is going to have to face it head on. Its not fun, its not dignified. But its what we have and we have to make the best of it. The best thing for your husband is he has a wife who loves him. Nobody will have to tell him he has ataxia. He will feel it in everything he does. Except sex. lol Only if hes laying down. Its all just a matter of time!
Your husband may be in denial about having ataxia. I was diagnosed 8 years ago with sporadic cerebellar ataxia and yes, I knew something was wrong. I was tested for many different things such as a brain tumor, stroke, MS, ALS, myothenia gravis among other things. It was definitely a process of elimination before I received a diagnoses. I had never even heard of ataxia before I was diagnosed. Anyway, it took me a few years to come to terms with my ataxia. Therefore, your husband may know something isn't quite right, but cannot accept it yet. This is just a theory as I'm no psychologist. I'm sure you're stressed right now as you care about him and notice things. Be patient and hopefully you'll receive the answers you/he needs to deal with the challenges of ataxia...I'll be thinking about you both.
Hi Victoria, Has your husband had any genetic testing done, I didn't so much stumble to start with my syptoms started when i was working in a chip shop and i noticed burns on my arms but never felt them, Then i had a couple of stumbles for no reason. My mum had M.S and at first was worried about that, But was diagnosed with Charcot Marie Tooth, then later with genetic testing was found to have Spinocerebeller Type 2 as well, At first i found it hard to believe but once the testing was done i had no choice it was in black and white, Maybe if he actually had a proper diagnosis he would acept it more.
I do think he realizes something is not right... he no longer complains about his weekly B12 shots and I see him popping the sub-lingual B12 tablets when he is having a spell. I hope he doesn't fight having numerous tests... hopefully the first test would give us a diagnosis (in a perfect world I guess). He still has a lot of anger over having the MRI.. he says me and the neurologist forced him into it. He felt like the normal MRI proved he was 'normal' and that we were wrong. Would have been better for them to have found something abnormal. I think he is most afraid that he might have a 'mental' illness.
He has not had any genetic testing yet.
So sorry for you and your husband. There are many types of ataxia. Mine was from minocycline I was taking for acne. Once I stopped taking the pills it reversed. I was using a cane and now I’m not.
It began three years ago. I stubbed my toe frequently, then graduated to losing balance side to side, then actually falling dropping things, slurred speech, bad handwriting to actually collapsing as I was walking and standing. Breathing problems, twitches, muscle spasms, horrible leg cramps and extreme thirst, brain pain, brain squeezing feeling, feelings of over sensitivity, hearing and emotionally, extreme fatigue.
I hope to fully recover eventually. I have given up gluten and yeast. That has helped too. Reduce stress. Stay active even when it seems impossible. Rest too. Eat healthy. No caffeine. Hyland pm leg cramps has been my salvation.
Keep searching for cause do a lot of research. I found the cause of my ataxia, not the doctors. The doctors had already written me off, permanently disabled dead in ten years. Told me I would never give up the cane and would soon be in a wheelchair.
Do not give up.
Best of luck to you.
Wow Phoebe! That is quite a story. So good you were able to figure it all out. Hopefully you will totally recover. Are you able to sue the pharmaceutical company?
I really would like to recover. I will think about suing them. They say it takes a year to recover if ever fully. The side effects of ataxia are listed for women taking the drug for more than 90 days. I was taking it for seven years. I would sue my doctors for letting me take it for so long.
Yes, Phoebe.. what a story! Glad you hung in there and figured it out!
Yesterday after dinner my husband goes to the silverware drawer to get out forks. He couldn't remember that we had just ate not 5 minutes before! I decided it would be a good time to go to the ER so we did. Unfortunately he got mad as soon as they put the plastic hospital bracelet on him. Is there something about anger that makes the ataxia go away? While waiting for the doctor he started watching the clock on his phone and after 30 minutes he left the ER... he had walked about a mile up the road by the time I got into the car and picked him up.
I only hope he realizes he has a problem before he hurts himself or someone else. :(
I replied but not showing here, but it is showing in my bio?
Yes anger does make the ataxia better for me also. That is why exercise is so good for this disease. It must be the endomorphins. How are u approaching him about the subject.? This is a really hard pill to swallow. I know from my own experience that he must feel different physically inside too. I am b12 deficient also.
I had never heard that about anger. I always heard that stress would make it worse, so I try to avoid stress. Phoebe, do you receive b12 injections?
Anger and stress are two different emotions. Stress can be controlled by not thinking about stressful events. Anger is usually a reaction to an immediate event.
Anyway I had one shot and have been taking pills since and they monitor the levels. But after taking b12 then my b6 was too high. Stopped taking b12 for a while and my hair started to fall out, so started taking again. I am Leary about taking anything at this point.
That is interesting about anger. Is there a treatment out there that is able to raise endomorphin levels? That could be very helpful I would think. I also take b12 and b6.