Hello My name is Carolyn and was diagnosed with Cerebellum Ataxia and my body is getting very stiff. Is this a common thing? My doctor is hard to get a hold of and feel like I am bugging him.
ive had cerebellam ataxia for 2 years now and havent had a problem with that. ive done a lot of research on it and thats not 1 of the symptoms.
I’ve had type 2 for a long time and I don’t recall anything.
You may want to check with your doctor and don’t feel like you’re “bugging” him. You pay good money for his expertise and that is what he’s there for. He went to school to be a doctor so he can help people. He can’t help if you don’t ask.
Hi Kay thank you. I feel like the doctor gets annoyed by my questions. So frustrating. Do you get tired a lot? I am always tired and seems when I am tired I slur my words and can’t put a sentence together.
Thank you Bobby, I am trying to figure out what all is going on. The doctor keeps taking blood and says they are also looking for an Autoimmune disease. Are you familiar with a test called Neuronal (V-G) K+ Channel Ab? He said my number is high and wants to keep checking these numbers. I am so confused. Any help is greatly appreciated.
ive never heard of those tests being done for cerebellar ataxia.are you going to a neologist
Hi again, yes at Mayo clinic here in Arizona. He is looking for other things on top of the Cerebellum Ataxia. What were your symptoms? If you don’t mind sharing Thanks. Carolyn
i get dizzy when bending over,move too fast,sit or get up too fast,move the wrong way. going up escalators bothers me,desending in a airplane bothers me, it all has to do with my equalibeum but i know there are people out there worse off than me.ive been through a lot before they diagnosed me so i know what type of symptoms that other people might have gone through before they were diagnosed.
do you have equalibeum problems? if you dont mind me asking what type of problems do you have? im not a dr. but i might get a better idea if its close to cerebeller ataxia. if you want ask me any questions about this and ill try to help.
Stiffness and fatigue are quite common with Cerebellar Ataxia. Keeping mobile as much as possible, just moving, helps stop stiffness from settling in. Overwhelming fatigue, more than basic tiredness, can be very taxing. Often, this can be dealt with by just giving in to sleep, and it passes🙂
You can find lots of information on our condition by logging onto www.ataxia.org which is the National Ataxia Foundation. There’s an explanation re some Types of Ataxia, although to date, many more types have been found. The Fact Sheets are particularly helpful. And, there are many useful links to Neurologists, Ataxia Centers and Ataxia Support Groups🙂 One of the Fact Sheets deals with Medications for Ataxia Symptoms, including stiffness.
No matter what type of ataxia, most basic symptoms are very similar. Poor control over balance, poor spatial awareness and poor perception of depth, which can easily lead to falls. The combination of bright lights, noise and the need to multitask, often make places like supermarkets very challenging, due to sensory overload.
The main thing to remember is, stay safe. If you’re aware that standing up quickly can make you unbalanced, always steady yourself before moving off. Bending/stretching to reach something can bring on dizziness, try to hold onto something stable. Outdoors, steps and kerbs can often be a hazard. It’s not unusual for someone to be totally unaware of the depth of a kerb, this still often happens to me😏
Being recently diagnosed can mean coping with a lot of confusing information. Do log onto the National Ataxia Foundation, the facts are easily understood and reliable🙂
stiffness and fatigue can go with other things not just cerebellar ataxia.
Dear Hiskid777, I have ataxia and get very stiff. It also effects my gait/balance, dexterity,speech (slurred), swallowing and vision (slow to focus). I seldom have dizziness though. Beryl’s so right when she says to keep moving, as this helps stiffness. I exercise for strength and balance (holding onto something or laying on the floor, so I don’t fall), as that helps me too! My best to you…, ;o)
thank you so much for taking the time to write to me!!! I am so grateful! I am sluring my speech when I am really tired. I have gait it’s not all the time just a few times a day. I get really overwhelmed in grocery stores. I thought it was in my head. It helps to know I am not going crazy that others are experiencing these things. I was walking my dog last week and because my mobility has been shaking more so this last few weeks. I feel like I am going to fall, my lower back and knee started bothering me as i am catching myself as I stagger it messes with my lower back going out. As i was walking the dog he saw a rabbit and yanked the leash and i spun around and I heard a pop in the back of my knee I buckled to the ground. I couldn’t walk for a few days. Had to go to orthopedic and they said i may have torn the meniscus. Walking the dog days are over. I am trying to settle into the new normal. Thank you again for reaching out to me.
Hi Rose thank you for taking the time to answer this. I will continue to move and stretch. I am sorry for all that you are dealing with.
Hi Bobby, I don’t have equilibrium issues like I am dizzy. My body will just tip over as if I am staggering drunk. I have also had where my body just involuntarily walking to the right or the left as I was trying to walk straight. They don’t know what kind i have due to they think mine maybe hereditary. They are doing some testing to check markers for cancer. The Neurologist said cancer can also cause the cerebellum to shrink. I had a CT scan of the lungs stomach and pelvis, they did find a cyst on my ovary and am getting a ultra sound on the 6th of April. The test I told you about earlier is what they are watching to see if the numbers go up. The normal range is a 2.0 in January mine was elevated to 5.0 and in February it went to a 6.0. Doctor said they are also looking for a autoimmune disease. I don’t understand all of this. Doctor is very knowledgeable just doesn’t speak in layman terms. That is why I am asking so many questions to others who have the disease. I thank you so much for reaching out and writing to me.
carolyn,im glad there doing testing on you to find out whats wrong. i know it can be frustrating. it took them 6 months to find out with me
if you only knew what a neurologist has to know to become a dr. there are things id still like to know about my condition but i cant find out by researching cause they only do so much cause its a rare disease. it sounds like you have a good dr… there are a lot of diseases that are hereditary. if you want you can contact me at my e-mail at ■■■■■■■■■■■■■■■■■■■■■■
Pets can be a mixed blessing:smirk: I have a cat, many’s the time I’ve toppled over attending to her needs. I hope you can find someone kind to walk your dog xB
Dear Hiskid777, No worries, as I know how frustrating and challenging ataxia is! If it’s any consolation, I fell a year ago and tore my meniscus in my knee. Had arthoscopic surgery to repair it, as well as clean up some moderate arthritis. Need a total knee replacement in the other knee (severe arthritis) and will eventually have it, as I’m trying to strengthen muscles in my legs first. Also back issues too, as ataxia really effects EVERYTHING! Anyway, you sound like you have a good doctor who is being very dilligent it trying to figure out possible causes of your ataxia! I have no idea why I have ataxia, as all my genetic testing has come back negative or inconclusive, as well as no one in my family, as far back as we know, has/had ataxia. You’re not alone in your journey…, my best to you…, ;o)
I hold onto the floor so I don’t fall, but sometimes I bend and just keep going. Exercising for strength and balance helps a lot.
Berl_Park I have come close to falling, tending to my cats. They are like my kids, as were my husbands, and their care transferred to me when he died. My niece-caretaker put my kitty litter box on a card table. They can jump and I don’t have to bend over. It really helps a lot.
good advice, thank you. We’ve had a succession of cats,
all of them living to a grand old age🙂
Our current cat, yet another stray, is about 12yrs old🙂 She had been living rough in someone’s garden for a year😏 How this came about I don’t know. But, she must have been someone’s well loved pet, she’s litter trained and has integrated happily into our family😊xB