I recently found out that I have cerebellar ataxia. I could not find out the exact one due to blood test costing so much 19,000.00+. I don't really know what to expect. I have left sided weakness in arm, hand and left leg, balance and coordination issues. At one point it affected my memory and speech but that is better. I found when I get too tired symptoms get worse. Last week I started walking lopsided. Like a limp in my left leg. I put a heavy purse on my right shoulder and that balances me out a little better. I just don't know what to expect with this illness yet. Any thoughts would be appreciated.
Hi PG - I’m not sure if there is something to expect b/c everone’s so different; however, a huge constant is that things change - whether for good or for bad - and learning to deal with those changes is helpful, no matter what.
I especially get the loss of complete functioning on the left-side, too. I’m in a similar situation, and that was a huge adjustment: to solely depend on one side - which isn’t even that strong anymore. I had a situation where I was completely immobile and regained some functioning and my left-side still functions somewhat so I have a little different perspective on it; however that loss as well as so many others hasn’t been easy by any means.
I know this much: every single one of us struggle with a fear, and many of us struggle with a fear of not knowing what to expect. So if you’re scared by this, know that you’re definitely not alone.
Hi PG.
You will go through many changes both physically and mentally. It is a dreadfull shock and you kind of go through a mourning process of the things you can no longer do. I have SCA6 which is Spinalcerebral ataxia on the 19th chromosone so I inherited mine. I an 48 and have recently been diagnosed but had the symptoms for a couple of years. I suffered severe clinical depression earlier in the year to the point of suicide. Luckily my husband managed to stop mme. I am much better now and am amble to try and get on with my life as best as I can.
Everyone with Ataxia is different. I have rubbish balance and co-ordinatin with intonation tremors and also I suffer with very painful muscle spasms in my feet and constant pain in my shins and knees due to the muscles having to work harder. Rinning in the ears, dodgy eyes where things seem to move, pressure on my head, can't walk without a crutch and I have to look at the floor when I walk. Chronic tiredness can happen. try not to fight it as it does get better.
Don,t be frightened. We are all here to support you as much as we can. We all have that bond as we are our own little family of Ataxians. I felt very low and frightened when first diagnosed but now 10 months on with the support of the people on here, I managed to get through my depression and feelings of self loathing etc and just taking every day as it comes
Not much help I know however; you can count on us for support when you need it.Theres lots of info on the weeb that give you some idea of what to expect both good and bad.
Hugs to you stay strong xxx
I , too, don't know what type of ataxia I have. But I recently found out that Medicare will pay for that test. I sort of assumed that all ataxians had the same symptoms, but they show up at different times. I just noticed a slight slurring in my speech and a real difficulty with buttoning buttons and putting on earrings.. I use a cane, but think I am inching toward needing one of those rolling walkers. With the cane, I still sway or lurch from side to side. Exhaustion is another symptom, so I know now I can't do a day-full of activities. One errand, or event is all I can do. I try to walk, but can only walk down tw o connecting streets and back. I go by about 10 houses and then turn around. Folks tell me I should be able to do Chair Yoga and when I find a class, I intend to try itl.
Hi, I've found a good site for you that explains Freinkel's exercises http://a2zphysioinfo.blogspot.ca/p/frenkels-exercises-for-ataxic.html I know this condition is frustrating to deal with but in time you learn to brush off your frustrations, also I find my Faith helps me a lot, not pushing just saying it helps me
Umigal said:
I , too, don't know what type of ataxia I have. But I recently found out that Medicare will pay for that test. I sort of assumed that all ataxians had the same symptoms, but they show up at different times. I just noticed a slight slurring in my speech and a real difficulty with buttoning buttons and putting on earrings.. I use a cane, but think I am inching toward needing one of those rolling walkers. With the cane, I still sway or lurch from side to side. Exhaustion is another symptom, so I know now I can't do a day-full of activities. One errand, or event is all I can do. I try to walk, but can only walk down tw o connecting streets and back. I go by about 10 houses and then turn around. Folks tell me I should be able to do Chair Yoga and when I find a class, I intend to try itl.
if
Beverly, thank you for your honesty.
And welcome PG, you have came to a great place for support and information.
Beverley said:
Hi PG.
You will go through many changes both physically and mentally. It is a dreadfull shock and you kind of go through a mourning process of the things you can no longer do. I have SCA6 which is Spinalcerebral ataxia on the 19th chromosone so I inherited mine. I an 48 and have recently been diagnosed but had the symptoms for a couple of years. I suffered severe clinical depression earlier in the year to the point of suicide. Luckily my husband managed to stop mme. I am much better now and am amble to try and get on with my life as best as I can.
Everyone with Ataxia is different. I have rubbish balance and co-ordinatin with intonation tremors and also I suffer with very painful muscle spasms in my feet and constant pain in my shins and knees due to the muscles having to work harder. Rinning in the ears, dodgy eyes where things seem to move, pressure on my head, can’t walk without a crutch and I have to look at the floor when I walk. Chronic tiredness can happen. try not to fight it as it does get better.
Don,t be frightened. We are all here to support you as much as we can. We all have that bond as we are our own little family of Ataxians. I felt very low and frightened when first diagnosed but now 10 months on with the support of the people on here, I managed to get through my depression and feelings of self loathing etc and just taking every day as it comes
Not much help I know however; you can count on us for support when you need it.Theres lots of info on the weeb that give you some idea of what to expect both good and bad.
Hugs to you stay strong xxx
Best to be honest. It's hard enough as it is without trying to fancy it all up. Life is a daily struggle for us all both good and bad mostly bad however, life is what we make it
I think it's very nice idea but don't beieve in support as a solution. I do believe however in the promise of a cure/treatment/something and in faith or belief of some sort
What to expect??? There is a range of things, I, for instance, have constant, relentless dizziness, but no pain, no eye thingee, no hearing or memory loss. My CA is not inherited but rather is thought to have an autoimmune connection, I had recurrent stubborn hives, and there are a host of auto-immunee issues in my family, I get an infusion once per month of IVIg, an immune suppressor. I have elevated "bad" antidodies, it appears. I have some, mild speech issue, also a lower voice, and I do tire, Must sleep or just close my eyes at 2pm. Many of my muscles seem weaker but sometimes ts hard to know what's psychlogical and what's physiological.
Expect that you will feel some sadness or depression and/or anxiety it's part of thecondirion, I am told,. My first neuro gave me some good advice: don;t think about this 24/7 and don't ascirbe every ache and pain to ataxia, I see a shrink, who has given me some mood medication but I find the talk therapy rather lame.. He actually said that suicidal thought are "normal" with this diagnosis. Great, right?
I never encountered an illness like this before, No one knows of it, or really knows what to do, I walk and exercise alot. I have parents who are 91 and 89 who eat/ate potato chps, chocolate abd red meat, and had huge stress in their lives and are in better shape than me. I used to be in great shape and thought/assumed I would follow in their path. I also carry a heavy bag on my LEFT side for better balance,but I walk up and down the stairs like an old fogie and often I feel as though someone ispushing me. A misstep will cause me to lose balance fast. I have stopped swimming, driving and working, I am not sure why. But I got over my escalator fears!!! I frequently sit to regain my composure, I keep conversations short,Yes, you can--- think of this line alot!! I am writing to you from Israel. I have yet to find anyone like me here, I am American by birth, Good luck.
Hi PG, All of your symptoms are exactly the same as my wife's, including the worsening of symptoms as they day goes on and she gets fatigued. Her symptoms developed over 2-1/2 years until she was finally diagnosed. First let me say that by being diagnosed with cerebellar ataxia does not mean that it is the genetic SCA. You need the blood test to determine if it really is SCA and what type. The tests do not cost $19,000. And it is fully covered under medical insurance and Medicare or Medicaid. The general term "cerebellar ataxia" is used by many doctors when you do not have ALS, MS, Parkinson's, but they know that your symptoms are from inflammation or damage to the cerebellum.. Since you had memory loss and poor speech that came and went it might indicate that the specific affected neurons coming out of your cerebellum, that are under attack, are changing and then healing. And is an indicator that your cerebellum is not atrophying (shrinking). My wife had two brain scans that showed no damage or shrinkage to her cerebellum over two years. And all of her senses (sensory messages traveling up to her brain) are perfect, but movement signals traveling down from her brain to her right arm, leg and mouth muscles are hindered. Finally after 2-1/2 years and seeing over 32 doctors, each with their own specialty, each focusing in each symptom on its own, we found a Doctor who immediately saw that her symptoms in composite were Lymes Disease.
Hi PG,
I have had toxin induced CA ffor years now.. I type very slowly and have tons of typos so while I'm not pluggijng my website at all, i have spent months documenting what I have experienced so check t out if you like and it may just help and I am also willing to answer any questions that you may have.
determinedtodetoxify.com
Jim!
Welcome PG! Your neurologist should've ordered the blood test to find out which ataxia gene you have. My insurance paid for my blood work. It will take a while before you receive the results. Ataxia is different from one person to the next that has it. I inhereited it from my mom and possibly my dad. My mom and me as of today, don't know which type we have. We were diagnosed almost 3 years ago. I'm 54 and very active and work. Being active seems to help alot. My mom is 76 and still drives but walks with a cane. Our symptoms are totally different from each other. While her balance is really bad and uses a cane, my balance is not that bad. The ataxia has affected my writing and my left side is very shaky. My husband told me that he has noticed that sometimes I'm walking with a limp or lopsided on my left side. I'm left handed and if I need to write something, I have to have one of my co-workers write for me or my friends. I've noticed that I'm dropping things more often. I've also noticed that I get tired and have to take a nap. I've never had to do that before. Having Ataxia is what we make of it. We could deal with it or let it get us down. My mom and me were relieved when we were diagnosed. We've been dealing with the symptoms for around 10 years and no doctor could find out what we had until we finally went to a neurologist that specializes in Ataxia. I know it's scary not knowing what's going to happen from one day to the next, but at least for me I'm still trying to live my life as best as I can and both me and my mom aren't trying to let having Ataxia get us down or rule our lives. Stay positive and have support and you always have your friends here.
A Huge Welcome PG, I too have no idea what type and why I have ataxia. As others have said, the type and degree of ataxia is different for everyone. I did have genetic testing for the known recessive types of ataxia, which was negative. My insurance covered it. My neurologist would like me to have genetic testing for the known dominant types, although I haven't yet. I was diagnosed 10 years ago, and my ataxia has progressed, albeit slowly. May I ask how you were diagnosed? Don't give up or give in to your ataxia, even though it's frustrating and challenging! I find exercise (safely) for strength and balance helps the most. You can exercise sitting if it's easier! Also, eating as healthy as possible (lots of veggies and fruit, no processed foods, etc.) is good for ataxia, as well as general health. As a rule, I use a cane to prevent falls! This site has wonderful people to offer support and understanding! You are not alone in your journey! ;o)
Give me an open forum, and I will tell you about Ataxia...
I have cerabellar ataxia with slurred speech , articulation problems and an uneven gait.
I do work out everyday and keep a '"normal" routine. Ataxia effects people in different ways at different times... It really sucks. but, you just have to keep going, surround yourself with positive people and just keep going forward.I am 47 with a husband and 2 kids 16 and 11....We have been married for 23 years and never imagined that we would have to be dealing with this....make the most of it and educate yourself....
Hello PG and welcome to LWA. Here you will find many others with similar medical issues and worries such as yours. However, you will also find that [for the main part] LWA users will be welcoming, try to give guidance where possible and, at the very least, 'listen' to, sympathize with and share experiences regarding your [our] condition.
What to expect? Tough one to answer that is! We are all different and you will see many forms of ataxia talked about here on LWA.
My ataxia, in example, is getting worse in stages; I have constant lower back and shoulder pain that I manage through medication and light to medium exercise when I can manage it. I too have problems with balance, coordination and fine motor control. I am also affected by Fibromyalgia and, as I'm sure you can guess, this can be a major issue alongside the ataxia.
Ataxia comes in many 'flavors' and mine, though stated as progressive and degenerative, is 'undiagnosed' in that I am definitely affected by ataxia but the medical types are uncertain on the type. My father has had mobility, speech, balance and coordination problems for many years and it was only recently that, after seeing the same neurological team as I see and the team sharing our records (with permission), dad was told that he has cerebellar ataxia and it is likely that I am the same but further investigation / monitoring is needed.
I cannot work now and dad has not been able to work for some years in both our cases this is because of our health issues. We do both try to keep active in body and mind and socially.
So that is a basic run down of differences of ataxia just in our family. On LWA you will see other types / differences talked about. You are also likely to see discussions about how people cope with ataxia both as patients and as carers and many other discussions both light and serious.
As others have mentioned, the main thing you are likely to have to deal with is change. This change could be minor or more serious and can [I will not sugar coat it] be hard to get used to. The main thing for me and, it seems, others regarding change is to try not to let it get you down and try to see the positives and keep a positive attitude where possible. I know that is somewhat easier wrote and read than carried out but I also know it to be true.
Try your best to give as much information about your condition and include how you feel emotionally when talking to your GP, doctor, neurologist or other medical people that you see in relation to your ataxia. In my experience, a lot of medical types do not know what ataxia is (other than, maybe, the basic dictionary definition) but all will be interested. At the medical centre I attend to see GPs I am known as a 'special case' as the centre staff and doctors had never had an ataxia patient before me. The people at that centre are always interested in seeing me and seeing how my ataxia progresses.
Anyways! I'm kind of getting to wall of text proportions so I'll close.
I sincerely hope that LWA can be of as much help to you as it has [greatly] been to me. Don't be shy! If you need to discuss an issue relating to your ataxia - go ahead. Want to rant? Rant away! Feeling creative? Head over to 'Showcase' and show us your talent.
Best regards,
Michael.
My doctor recently did blood work and is checking for Lyme's Disease among other things. Thought I would hear something today but guess it will be next week. My doctor had ordered a complete ataxia blood workup profile and the company that agreed to do it wanted over 18,000.00. The hospital might help me with some of $$ but I needed to come up with over 4,600.00 for my part. I don't have insurance and can't afford it.
EdMoose said:
Hi PG, All of your symptoms are exactly the same as my wife's, including the worsening of symptoms as they day goes on and she gets fatigued. Her symptoms developed over 2-1/2 years until she was finally diagnosed. First let me say that by being diagnosed with cerebellar ataxia does not mean that it is the genetic SCA. You need the blood test to determine if it really is SCA and what type. The tests do not cost $19,000. And it is fully covered under medical insurance and Medicare or Medicaid. The general term "cerebellar ataxia" is used by many doctors when you do not have ALS, MS, Parkinson's, but they know that your symptoms are from inflammation or damage to the cerebellum.. Since you had memory loss and poor speech that came and went it might indicate that the specific affected neurons coming out of your cerebellum, that are under attack, are changing and then healing. And is an indicator that your cerebellum is not atrophying (shrinking). My wife had two brain scans that showed no damage or shrinkage to her cerebellum over two years. And all of her senses (sensory messages traveling up to her brain) are perfect, but movement signals traveling down from her brain to her right arm, leg and mouth muscles are hindered. Finally after 2-1/2 years and seeing over 32 doctors, each with their own specialty, each focusing in each symptom on its own, we found a Lyme Literate Doctor who immediately saw that her symptoms in composite were Lymes Disease. Even though she already had two Lyme's tests and a spinal tap that came back negative, he sent her blood to IGeneX lab and it came back positive. So I highly suggest that you have your doctor get a blood test from IGeneX lab in Palo Alto, CA. If you need help finding a Lyme Literate MD there are sites on the web. Best of Luck
I passed out while walking 1/2 block home one evening. Originally they thought I had had a stroke due to left sided weakness etc. but the MRI's, CT and other test showed nothing. I was treated for high blood pressure and rocked on for 4 months until I just felt so bad went back to doctor and then changed doctors. She is a PA and did some basic neuro test in office and sent me to physical therapy and made a referral to neuro dr. Luckily a few months later a neurologist came to work at our local hospital and she saw me and did lots of test, reviewed all the MRI's etc and also consulted with some of her medical friends that are specialists. Since I could not afford the genetic blood test to determine the exact ataxia. They came to the conclusion that is was cerebellar ataxia. I also found an old letter from a family member that stated that I had an uncle that died from genetic type spino-cerebral ataxia.(I think that's how u spell it.)
rose said:
A Huge Welcome PG, I too have no idea what type and why I have ataxia. As others have said, the type and degree of ataxia is different for everyone. I did have genetic testing for the known recessive types of ataxia, which was negative. My insurance covered it. My neurologist would like me to have genetic testing for the known dominant types, although I haven't yet. I was diagnosed 10 years ago, and my ataxia has progressed, albeit slowly. May I ask how you were diagnosed? Don't give up or give in to your ataxia, even though it's frustrating and challenging! I find exercise (safely) for strength and balance helps the most. You can exercise sitting if it's easier! Also, eating as healthy as possible (lots of veggies and fruit, no processed foods, etc.) is good for ataxia, as well as general health. As a rule, I use a cane to prevent falls! This site has wonderful people to offer support and understanding! You are not alone in your journey! ;o)
I've been looking at canes but holding off. What type did you find helpful?
rose said:
A Huge Welcome PG, I too have no idea what type and why I have ataxia. As others have said, the type and degree of ataxia is different for everyone. I did have genetic testing for the known recessive types of ataxia, which was negative. My insurance covered it. My neurologist would like me to have genetic testing for the known dominant types, although I haven't yet. I was diagnosed 10 years ago, and my ataxia has progressed, albeit slowly. May I ask how you were diagnosed? Don't give up or give in to your ataxia, even though it's frustrating and challenging! I find exercise (safely) for strength and balance helps the most. You can exercise sitting if it's easier! Also, eating as healthy as possible (lots of veggies and fruit, no processed foods, etc.) is good for ataxia, as well as general health. As a rule, I use a cane to prevent falls! This site has wonderful people to offer support and understanding! You are not alone in your journey! ;o)
Hi
Sorry to hear that you don’t have insurance. Maybe now you can get something for next year non contingent on pre-existing condition.
Please make sure that your doctor sends Lymes test only to IGeneX in Palo Alto. Theirs is the only reliable complete test. My wife had two come back as false negative. The genetic test only tells you if your have a heredity CSA. But since you had speech problem come and go it does not sound like yours is heredity. Lyme’s is known for morphing and changing as it grows in your system.
PG said:
I passed out while walking 1/2 block home one evening. Originally they thought I had had a stroke due to left sided weakness etc. but the MRI's, CT and other test showed nothing. I was treated for high blood pressure and rocked on for 4 months until I just felt so bad went back to doctor and then changed doctors. She is a PA and did some basic neuro test in office and sent me to physical therapy and made a referral to neuro dr. Luckily a few months later a neurologist came to work at our local hospital and she saw me and did lots of test, reviewed all the MRI's etc and also consulted with some of her medical friends that are specialists. Since I could not afford the genetic blood test to determine the exact ataxia. They came to the conclusion that is was cerebellar ataxia. I also found an old letter from a family member that stated that I had an uncle that died from genetic type spino-cerebral ataxia.(I think that's how u spell it.)
rose said:A Huge Welcome PG, I too have no idea what type and why I have ataxia. As others have said, the type and degree of ataxia is different for everyone. I did have genetic testing for the known recessive types of ataxia, which was negative. My insurance covered it. My neurologist would like me to have genetic testing for the known dominant types, although I haven't yet. I was diagnosed 10 years ago, and my ataxia has progressed, albeit slowly. May I ask how you were diagnosed? Don't give up or give in to your ataxia, even though it's frustrating and challenging! I find exercise (safely) for strength and balance helps the most. You can exercise sitting if it's easier! Also, eating as healthy as possible (lots of veggies and fruit, no processed foods, etc.) is good for ataxia, as well as general health. As a rule, I use a cane to prevent falls! This site has wonderful people to offer support and understanding! You are not alone in your journey! ;o)