Hi, It has been 5 months, after sudden onset, and neurologists don't know what is causing ataxia or/or some don't even acknowledge it. One admits that he thinks it is phychogenic and wants to prescribe antidepressant and states doesn't even want to use the word "ataxia". Ear doctors say the ears are not the cause. It is hard to explain how it feels, but it feels like permanent disability. Involuntary lateral movements are felt, but not visually observable, from the waist, truck, and neck. Also, when bending forward it feels like keep going. Movements feel off balance, whole body integrity is not there. Poor coordination and hard to look side to side while walking, etc...... does anyone know about having this type of ataxia, what kind it is, what part of the brain is damaged? Any physical therapy that would help? Does anyone know of anyone who gets better? Life is like a nightmare/turned upside down. Don't know if this is permanent disability and to try to face it or keep looking for diagnosis, treatment, therapy, cure, anything to recover....? Exercises/videos, CBD.... Any help would be greatly appreciated. Thank you.
If I were you, I’d make every attempt to seek out a Neurologist who actually SPECIALISES in Ataxia. Or, ask for an appointment at an Ataxia Center. Contact details can be found on www.ataxia.org
We all know that it can be a tortuous journey trying to get any kind of diagnosis, worse again when the cause is neurological.
When I was finally told the cause of my problem was Cerebellar atrophy, initially I felt relief, at least I wasn’t imagining it.
I’m a lay person but I recognize your symptoms as being similar to mine, and I have Cerebellar Atrophy. My vestibular problems can make me very disorientated, I also had my ears checked and nothing untoward was found.
Sadly, if Cerebellar Ataxia is the case, there is no cure. But, please see someone who actually specialises in the condition, all Neurologists aren’t the same xB
I have what sounds like similar symptoms. They diagnosed ataxia after an MRI of the brain - that's how they could see the athrophy of the cerebellum. I later found out, through genetic testing, that the ataxia is a symptom of Hereditary Spastic Paraplegia 7 - but the ataxia symptoms (balance problems, ocular nystagmus, difficult to look around) are all there.
I agree with Beryl - see a neurologist that specializes in, or at least knows about, Ataxia. That's the big thing - I've been lucky as my 1st neurologist was very up on the condition - he also works with a lot of people with Parkinson's, so he's very knowledgeable on movement issues.
First - find a neurologist or someone who specializes in ataxia.
Second - There are 18+ different types of ataxia. It can be hereditary or caused by a medical condition (head traumas, strokes, etc). Within each type it can give you some symptoms and not others. Ataxia is incurable and progresses at whatever rate it wants to.
Third - I would recommend a physical therapist (make sure they specialize in neurological patients not orthopedic). There is a difference. PT is NOT a cure but I found it helped me walk better, be less off balance, looking side to side & up in the sky without hanging onto anything. I also did occupational therapy. I found out through the initial eval that my eyes were being affected and that can make a difference in your balance.
Fourth - If you feel you feel you can't work apply for disability. In the U.S. neuro conditions are usually allowed as long as you have the medical documentation. Be advised "ataxia" is a symptom and not a diagnosis and is not accepted. You need to get a specific diagnosis.
Fifth - there is no cure, but it seems exercise (whatever you can do) seems to help. Just need to make sure you work on your core (neck to butt). Legs have very little to do with balance.
Sixth - this link might help to give a basic understanding https://www.ataxia.org/learn/ataxia-diagnosis.aspx
Finding out what type or ataxia you have is critical. Most general physicians and neurologists don't have a clue about the complex types, etc. If you are able please contact Char Martins at the Bob Allison Ataxia Clinic in Minneapolis, Minnesota. You can find her email and information online. The ataxia clinic is part of the University of Minnesota Hospital system. They do a lot of specific ataxia research and can help diagnosis you properly.
I have a genetic form of ataxia called SCA 1. I have found that diet is very effective at slowing the progress. Research a ketogenic diet and ALS or Lou Gehrig's disease and you'll find lots of information. Ketogenic diet is not easy to follow but it's worth it if you think of food as medicine. I'd rather change my diet than take a drug with side effects.
As far as physical therapy, I go to a specific balance center as well as do yoga. Strength in the core and legs is key and keeping as fit as possible helps. If you have hand control issues with writing, etc. There are workbooks to help with your writing skills and I use an adult coloring book to keep up my hand coordination. I also do breath work to keep my diaphragm working correctly. Lots of people with ataxia develop a weak diaphragm and can't cough well which is necessary if you get an infection.
Good luck to you and finding a program that helps. Never give up fighting and continuing to do what you can to help yourself is the best we can do until they find a cure.
have you been taking medication? it sounds like you have the same ataxia i have. [ cerebeller ataxia] it can be caused by different things. remember im not a dr. but its sounding just like me. if its cerebeller ataxia the damage is done and isnt reversable meaning it cant be fixed. were lucky so far. theres ppl worse off than we are.it wont get better. try social sucurity disability but you have to get a dr. to diagnose you first.theres lots more to know. im in p.t. now [3 weeks] but its not guarented to work.im not on this site a lot so if you want contact me at my e-mail add. ■■■■■■■■■■■■■■■■■■■■■■
Hi I have acquired ataxia and been living with it for over 11 years now. All those symptoms you mentioned I have experienced and to this day doctors are still fighting over my diagnosis. I recommend fighting for doctors to keep looking, I know it’s a hard road but the hardest part is not knowing and being able to understand what is going on and knowing your limitations. I see a physio therapist and this helps to raise awareness as to what muscles to strengthen in order to stay upright I highly recommend swimming as the fear of falling is eliminated and can ease some aches also. Learning to adapt is essential if you want to stay in control of your life, I have just recently learned that I can fold my laundry if I sit on the bed and do it, my balance is required less and my aches are lessened.
allow your support group (friends & family) to assist without letting them take over. I struggle daily with that but if they see and understand the struggle it lessens the load you carry.
My thoughts are with you take care.
thanks for your info
There are over 200 causes of ataxia. Over 60 of them are genetic, ataxia is commonly misdiagnosed and is very hard to diagnose if the ataxia is very mild. There are different types of ataxia such as cerebellar, sensory and vestibular. It took me awhile to get properly diagnosed with cerebellar ataxia as the doctors commonly try to treat the condition and prescribe medicine for Ménière’s disease, if the medicine does not work than it is commonly an ataxia. Blood work should be done and a 24 hour urine test also to rule out Wilson’s disease. Than a brain and spine MRI should be done than followed by genetic testing for Huntington’s disease, Fredric’s Ataxia and the SCA tests available in your area. This is the proper protocol you should be taking in finding a diagnosis. No doctor should be ignoring your symptoms like this. Good luck!