Okay so have had ataxia since I was about 5 years old at the time they could not determine whether it was hereditary or not because there have been no known issues in our family history of any other ataxia and testing upto the age of 10-11 years old produced NO further information on cause of it either.
My issue is this in the last 10 years my mum has had numerous health issues and has been commenting the last few years she walks and falls alot like a drunk person eerily similar to my symptoms muscle weakness and co-ordination and balance problems along with an unusual gait! Originally they blamed the balance issue on manieres sp? a problem with her ear after an ear infection which I know did cause problems back then but they said it had cleared up and she still has major balance problems and co-ordination issues. She is now falling on a regular bases and has severely burnt her arm. I am admittedly starting to wonder that little what if question at the back of my mind could it be possible she has ataxia but never knew her issues started when she was around 35-36?
I have advised her to mention it to the doctor they originally said the issues were her arthritis at the time they are now blaming her neck and spine but she has progressed rapidly at the age of 59 to having to stay indoors and shop online for her bits and barely go out unless her partner is with her to stop the falls she is having due to balance issues. She can only handle 5-10 minutes of shopping before she feels stiff and unsteady and has commented she get tired very quickly. Plus has said when she is tired the co-ordination issues are worse It's seems very similar to ataxia and she has commented today she is starting to wonder if she has it as well. I have said please mention it to the DR you visit in case because no one has asked or thought to mention she should be tested. It's been playing on my mind a lot lately due to her increased symptoms and the age she started having issues and which was immediately chalked it up to artheritus.
So what do you guys suggest? My thoughts are should she be tested and checked to be sure? or just keep living with with what each Dr says. Thanks for your time
I would recommend a scan for sure. Whether it’s coincidental or hereditary with dif ages of onset she deserves intervention now. It must be hard for both of you. Good luck
Make sure you see a doctor who is open and "curious" enough to see you all way through. You might want to see an ear doc to rule out any issues with balance there. You might have a blood test for gluten to see if the ataxia is related to that. Gluten can also cause arthritis. But in any case, be "pushy" with the doctor and don't give up. Other blood work may also be necessary to rule out possibly treatable diseases.
Find a recommended neurologist who specializes in gluten ataxia.
Record your sessions and take someone with you as an advocate.
Have a brain MRI to make sure there is no tumor.
I had recent dizziness that I thought might be related to ataxia. I saw an audiologist, ear specialist and he tested me for crystals. he did a very brief manipulation of my head and it seems the dizziness is gone. He said crystals are common in older people and will often recur. There are exercises one can do at home.
Hope this helps!
Can you tell us what the exercises are?
There is a lot of info on Google. Here is one.
BPPV Fact Sheet
I suggest seeing a recommended ear doctor. This is a common eason for dizziness and is different than vertigo.
I would visit a neurologist who specializes in ataxia. Most general neurologists are familiar with the symptom of ataxia but do not understand the DISEASE of ataxia especially hereditary ataxia. I was diagnosed with Hereditary Ataxia in 1988 but they did not know what type. Over the years I went to many general neurologists and sometimes needed to explain ataxia to them and was even told that I have MS in addition to ataxia. I went to a teaching hospital and found a neurologist who had been in the field of Ataxia research for 25 years. He told me that ALL the symptoms that were used to diagnose MS were explained away by ataxia. He said "You never had MS.'. He sent me for genetic testing (which didn't exist in 1988) and found that myself as well as my 2 brothers who had since been diagnosed, had ARCA-1. Only 60 other people have been diagnosed with this. I believe if I had never gone to an expert I would never have the peace of mind to know what I have. A LITTLE knowledge can be dangerous.
tumble, this is most amazing information. Thanks so much! Most neurologists don't know about gluten ataxia either.
Hi Emmy, I really sympathize with you. I'm dealing with the same thing on my end. I understand how your feeling. Unfortunately she and you may never know. I was told that if you suspect someone has Ataxia in your family all you can do is make suggestions and help point them to the right Neurologist that specializes in ataxia. If the person doesn't take your suggestions pushing the issues don't help either you or (them) her. I was told to focus on trying to enjoying your relationship and tell yourself it is what it is. Everyone comes to a concussion on their own you can't force them to.
As far as it goes for a suspected parent I feel it's a real shame that they won't get tested even just to help you out but unfortunately was told by a Dr. that they won't get tested the only thing that you can do is after they pass, that is when you can get a biopsy and find out if she had SCA Ataxia or what kind she had.
I have been told that my condition, is only passed if your mother or dad has it. If your mom carried the gene which happened in my case and she was diagnosed with Machado Joseph Disease or MJD for short....u would have 50% chance of inheriting the disease. I unfortunately inherited this disease from my mother and my middle brother got back his blood work and found out he also inherited this disease. My last bro hasnt shown any symptoms-Thank God- and has not been tested as of yet. I have found out that my grandfather had MJD and suspect my great grandmother had it as well. It is interesting to note this and kind of sad at the same time!
The first thing that was done is to notify everyone in my bloodline of the diagnosis and the possibility of occurrence in their 'Family".