Good for you Lavender, physical therapy should be very helpful. I went to pt for a year and I still do the exercises for strength and balance that I did at pt when I attended (my pt wrote down the exercises w/pictures to take home with me when I finished). As I was diagnosed with sporadic cerebellar ataxia (unknown cause), I also had genetic testing for the known recessive ataxias, and found out that my ataxia is non-hereditary. Therefore, my ataxia is truly sporadic cerebellar ataxia (non-hereditary/unknown cause). Good luck on Friday with your test results!!! ;o)
So here's a sad reality. MANY (not all) doctors do not take women patients seriously. My husband supported me and went with me to all the doctors appts. They would try "it's just stress or in your head" and my husband would firmly but respectfully them they were wrong. He was my advocate. If you can get a intelligent guy to be your advocate it will help a lot.
I wish it weren't so, but it's true.
Lavender, the word "ataxia" comes from the greek word "a taxis" meaning without order or incoordination. The word "ataxia" means "without coordination". Therefore, ataxia is a symptom. Go to the "National Ataxia Foundation" website for a correct "diagnosis" of ataxia. You'll find a wealth of information there...
Thanks guys… Seems I need to get my husband to speak up lol! I just am so confused. Is r isn’t ataxia a diagnosis?
My Neurologist Always asked me if there's anything new with my Ataxia. Because everyone has different experiences. My MRI was normal. But the doctor could see all that I cant do. I was Diagnosed with Cerebellar Ataxia.
Lori
Lavender said:
Yesterday this new primary neurologist said that Ataxia is a symptom not a diagnosis! What? Am I wrong for feeling she is way off?
Thanks Lori. So I think it’s safe to say that 'this new primary neurologist ’ isn’t I. My bests interest.
I started with a man Neurologist. Many years ago. The male doctor said only men get Ataxia. And I said well my father and his sister has it. The doctor said that my aunt and myself had something else. Needless to say I stopped going to him. Now I go to a women Neurologist.I wish I did have a man like yours. lol
Lori
Julie Hahn said:
So here's a sad reality. MANY (not all) doctors do not take women patients seriously. My husband supported me and went with me to all the doctors appts. They would try "it's just stress or in your head" and my husband would firmly but respectfully them they were wrong. He was my advocate. If you can get a intelligent guy to be your advocate it will help a lot.
I wish it weren't so, but it's true.
I guess its all up to what we tell our doctors. They really don't know to much. They really can not do any for us. Except to tell us eat right, and build our core. Keep stretching. Its all in how he or she listens to you. Does some test to rule out things. There are Ataxia's due to food, lack of vitamins. ect.ect I dont know what the doctor will see when you go to them.
Lori
Lavender said:
Thanks Lori. So I think it's safe to say that 'this new primary neurologist ' isn't I. My bests interest.
I agree with taking a man with you to appointments. When I was in the hospital my husband was there virtually ALL the time, but the nasty neurologist would only come in and be incredibly condescending and rude when my husband had left to the cafeteria !
Well I will definitely talk about weather or Ataxia can be a diagnosis when I see my specialist Dr. Perlman at UCLA this Friday. I will mention this discussion with her. I think she as one of theDr. On the medical advisory board of the National Ataxia Association, will have a huge opinion on this. You know I asked her as well as Dr. Vosxkul , head of the UCLA MS. Program, the following question, “is it possible that this is all in my head or that stress is what has caused the thinning and degeneration of 2-3% thinning in my cerebellum”, and the answer from both was an adamant NO! It is not physiological at all it is a physics. Illness
So confused and frustrated…
Ataxia is a "symptom" of a number of neurological disorders. For example, there are ataxia "symptoms" due to problems with balance, gait, dexterity, speech and swallowing to name a few. Yes, one can be "diagnosed" as having a certain type of ataxia, but that's due to the ataxia "symptoms" they're experiencing. Ataxia in itself is not an illness or disease, like MS or Parkinson's Disease. Both MS and Parkinson's have ataxia "symptoms". Does this explanation help?
From Aussie Rose
Thankyou for your encouragement...don't apologise for being passionate...I think it's great
rose said:
Yes, Lori, I agree, strengthening your core will be helpful! For everyone else too, I find exercise for strength and balance helps me physically, as well as emotionally (good endorphins for the brain). Having ataxia is exhausting! I do exercises at the counter, as I need to hold onto something, and on the floor. If someone is unable to stand, exercises sitting are helpful also. Just stretching your muscles is therapeutic (arms/legs). Do whatever you can (safely) because it's all helpful. Yoga and pilates are very good too! I know it takes more effort to exercise, but the payoffs are definitely worth it! Stress, anxiety, depression, sadness, mood swings and lack of concentration seem to be problematic for all of us with ataxia. Knowing this, we need to take extra care of ourselves, like getting enough rest/sleep, eating healthy (gluten-free if need be) & exercising. As I always say, we may have ataxia, but ataxia doesn't have us...ha!!! Sorry if I came across sounding like a cheerleader, guess I'm just passionate!
rose, Very good explanation! I hate it when people say I have a disease! I don't have a disease. I have a disability. And yes passionate is good! Rose did you go GF?
Lori
rose said:
Ataxia is a "symptom" of a number of . For example, there are ataxia "symptoms" due to problems with balance, gait, dexterity, speech and swallowing to name a few. Yes, one can be "diagnosed" as having a certain type of ataxia, but that's due to the ataxia "symptoms" they're experiencing. Ataxia in itself is not an illness or disease, like MS or Parkinson's Disease. Both MS and Parkinson's have ataxia "symptoms". Does this explanation help?
Thank you Rose, you did a great job explaining it however, if one is diagnosed with say Fredricks Ataxia, then doesn’t that count as a diagnosis? Yes I think it does…so I’m still a bit confused. I am looking for aid and this has been a question that has come my way. Any help would be so appreciated…
You are correct Lavender! Friedreich's Ataxia is a neurological disease like MS or Parkinson's Disease and is a "diagnosis". Sporadic Cerebellar Ataxia (which I have) is also a "diagnosis", but not a specific disease. Your type of ataxia is a "diagnosis" also. Remember, any type of ataxia can be a "diagnosis" because of ataxia '"symptoms" (which can vary depending on the type of ataxia one has) but is not all ataxia's are classified as diseases. Why?...I have no idea...ha! Remember, the meaning of the word "ataxia" is "incoordination" or "without order". You're so right, it's very confusing!!! I think it's best to get an explanation from the neurologists you see Friday, as they're the experts.
Thank you! I was just so confused. My nuero said I had Myoclonic dystonic Ataxia a Nd Friday well get the genetic tests as well as another MRI to see if my cerebellum had thinned more. I really think I will change my primary nuero though.
You're so welcome! As I said before, I agree, it's all very confusing! And I'm by no means an "expert" in matters of ataxia...ha! I was diagnosed with my ataxia about 8 years ago. I have researched and read a lot over the years, trying to find out as much as I can about ataxia. I have a a neurologist I like very much, but because there's no cure for my type of ataxia, I find I have to be my own patient advocate. I'm trying to keep myself as healthy as I possibly can for as long as I can. I also find all of the info. very interesting! Once again, good luck on Friday!
…good thoughts for Friday! Thanks again for sharing…
Blessings to you.
I had multiple brainstem and cerebellum strokes with paralysis with the last three. I have had to research and rehabilitate myself. This condition cost me everything and has made me a 50 yo invalid. I have found this website very helpful so far and have turned to religious values for support. I stagger and have very little feeling, on temperature or pain sensation, or I feel like my body has a certain numbness. With each stroke I loose different senses. I am a diabetic, with high blood pressure. I walk with a cane and often walk short distance unaided because I push myself. I ain't living independent any longer (want too) and know others are worse off than me. I'm learning!
Unfortunately mine started at work and I got a feeling of being drunk and ofcoure off balance, I was repairing a metal sheer and I thought to my self Oh..I'm just a little dehydrated and kept on working. While I was feeling that buzzed feeling and thinking to my self this isn't so bad I still have control...then all of a sudden the machine cycled and the piston that holds the sheets of steal came down and crushed off the ends of two fingers on my left hand...I knew right away they were gone and braced for the pain that I knew was going to take over that buzzed feeling...Sense then my buzzed feeling became a Dizzy and balance issue that just keeps progressing day to day...But hey....who do ya know that can feel that good and not drink a drop.....Well at least I can Laugh about it...