Ridicules!! If there’s a cure or not is completely beside the point, you have a right to be propperly diagnozed. And more important: no cure YET. No one can look into the future and with only 49 yrs you still have time to benifit from new found meds or treatments in future.
I realy can not understand some doctors!
Hello oblidioblida
I can understand how you feel. A neurologist I went to a few years ago before I was diagnosed with CA said to me that I wouldn't really want to know if I had something serious, so therefore he wasn't going to send me for an MRI or other tests.
I really wanted to know....I felt that I'd be able to deal with it better than being fobbed off. A GP once told me to persist, Rose, persist.
Best,,,Aussie Rose
oblidioblida said:
Hi Rose and Hans, thanks for your concern ! I haven't had an EMG, I don't know why. I've had MRI's when I was in the hospital 3 months ago and they were normal -- well, I think they said there was some normal atrophy due to age ( how to make me feel ancient - I'm 49 yikes !!) They did the original testing based on possible MS, and because we pushed for testing- mostly the hospital neurologists attitude was extremely rude and dismissive and that it was all due to 'stress'. I like my current Dr., as he actually listens to me -- but it did concern me that I asked him about testing for types of cerebellar ataxia -- and he said there wasn't really a reason to test for specific type since they are incurable, and I won't be having children . That didn't make much sense to me -- I'm clearly getting worse quickly, and don't really want to have just a vague -- "post -viral - will probably go away within the next 2 years" Plus, it seems there are treatments for some things, if not cures, and I would like to get the appropriate ones, and not just be in limbo. Sorry for the thread de-rail.
Yeah, I have to say that is something that has been absolutely shocking to me -- that these Dr.'s seem to think I'm being "pushy" because I really want to know what's going on. I can't imagine why I wouldn't push for answers -- I'm unable to walk or shower without help, I can't even use the microwave without dropping things, I twitch and shake and can't hold my grandbabies without being watched, let alone take care of them by myself, I am dependent on other people for the most basic things ---- my entire life has been completely turned upside down and is going downhill by the day -- but for some reason I should just not worry about it and wait it out to either get better.... or not ???? I just don't understand the mind set.
Me neither, it is up to the patient to decide wether or not to know, not the doctors
For what it's worth, when I was diagnosed with cerebellar ataxia, I had an MRI (which did show some atrophy in my cerebellum) as well as a muscle/nerve test and blood work. My neurologist was trying to figure out what was wrong with me and looking for other things like a brain tumor, MS, Parkinsons, myothenia gravis, stroke etc. Therefore, through the process of elimination, I eventually was diagnosed with sporadic cerebellar ataxia (non-hereditary/unknown cause). I had genetic testing for the known recessive types of ataxia and results were negative, therefore as far as is known, my ataxia is non-hereditary. Anyway, although there's no cure, I'm glad I know what's wrong with me. For whatever reason, knowing gave me peace of mind. I agree with Hans...the patient has the right to know or not!!!
Rose...I couldn't agree with you more. Your story is almost identical to mine,
rose said:
For what it's worth, when I was diagnosed with cerebellar ataxia, I had an MRI (which did show some atrophy in my cerebellum) as well as a muscle/nerve test and blood work. My neurologist was trying to figure out what was wrong with me and looking for other things like a brain tumor, MS, Parkinsons, myothenia gravis, stroke etc. Therefore, through the process of elimination, I eventually was diagnosed with sporadic cerebellar ataxia (non-hereditary/unknown cause). I had genetic testing for the known recessive types of ataxia and results were negative, therefore as far as is known, my ataxia is non-hereditary. Anyway, although there's no cure, I'm glad I know what's wrong with me. For whatever reason, knowing gave me peace of mind. I agree with Hans...the patient has the right to know or not!!!
Yes Rose I agree with you. I am tired because it does take so much energy to do something. I feel somewhat good when I wake up in the morning. But within hours Im dead tired. And yes I use my muscles a lot differently.
Lori
rose said:
Yes, I agree, ataxia REALLY me out! I think it's because it takes a lot of energy to do anything, and I use my muscles differently just to hold myself up. Does anyone else feel this way?
Hi Lori,
I left out the word "tires" when I replied...oops! Thank you for knowing what I meant! I've talked to a few people with ataxia, and fatigue seems to be a common thread, so I know it must be because of how we use our muscles. Also, I get not just physically tired, but emotionally too, as I have to concentrate so heavily when I do anything, Is that true for you or anyone else also? Sometimes my emotions are all over the place, anxiety, sadness, etc..., like my brain is overwhelmed by it all. Do you or anyone else feel this way?
Rose, Stress, sadness is over whelming at all times. It seems Im upset all the time. And yes concentrating is very hard. What I'm tiring to do is. Every time I am up. (walking) I non-stop think about my walking. Its on my mind always. I think I am afraid of falling. Did that make sense? But I am working a little on strengthen my core. And I think it might keep me walking a little longer. Plus I noticed When I do walk Im not so sloppy looking. Oh don't get me wrong, I still walk like a drunk. And when I do go out. I still don't find it funny about the way I walk. I don't think I ever will. And I hate it when people say it's not so bad. Ahhh yes it is. Ataxia sucks! But I am a mom of 3 wonderful children. And a grandma. So life is good!
Lori
"...Sometimes my emotions are all over the place, anxiety, sadness, etc..., like my brain is overwhelmed by it all. Do you or anyone else feel this way?"
do mood swings count? I can be very hyper at times but than it falls in to a deep pit and i'm exhausted. At the end of a busy day i'm worth nothing at all. not the common tiredness but simply drained, empty, away with the fairies.
Hi Hans, Yes I do feel all of those things. I do something as little as gardening. And I'm beat after it. And my emotions are all over the place. The hardest thing to work on. My kids are telling me all the time ,"that I am over reacting" Believe me when I say. Your not alone!
Lori
I’ve wanted kids for a while now but it won’t be fair as my ataxia is heditery, had email from a doctor at queens square hospital saying there one step closer to finding a cure for my sister and I,s illness, as they are requesting samples Of my well family I.e grandad and my second uncle ( nan’s brother 's) blood…
Oh my goodness! Everything you guys have mentioned I live every day…just yesterday I saw a new neurologist as a a primary as I still have Dr Perlman at UCLA. Anyhow this new one suggested I see a psychologist and a physiatrist!! Really?! Is this in my head? Yeas in my cerebellum, I was shocked and offended at the same time. But I suppose going from running to a wheelchair cohd cause the need. I am emotionally drained, moody and confused MSG of the time…concentrating is so difficult now.
After we eft the Dr. We went to Cosco to shop. I was in a motorised cart, and it appended. I began feeling like I was going to faint then suddenly the tremors got crazy and my face began to contort intoa position that nearly through my lower jaw out. My body started to contort and my leg and arms pounding down hitting what ever was there. Imbarrassed with my family, my 10 year old daughter, we raced for the exit…
I couldn’t speak, I couldn’t, move, and without the Attavan I could feel everything this time. Painful, contortions and violent tremors that lasted the entire way home in the car. 45 minutes later we were home and everyone wanted me to take an Attavan and I wanted to stay aware and not drugged out so I could know. It was horrible! My family said it was not as bad as it USA.ly is, that most of my episodes are 10 times worse! Really?! I have been kept on so many drugs that I don’t remember…thank goodness!
My emotions are up and down, I’m exhausted, sore and sad but thankful it was ok. This morning… My speech is off and my eft leg is so numb, I can harly move my toes.
Hi Lewis, Yea I have 3 kids. 30, 26, 13 My Ataxia also is hereditary. I worry everyday if one of them is going to get this. The kids try and joke about it. By saying. Which one of us is going to get it. I dont think its funny. Hopefully they take after there father's. ha, ha. It would be great if they find a cure!
Lori
Hi Lavender, Yea I hear what your saying. Load and clear. This sucks big time. I wish I could talk as good as I can somewhat type. lol
Lori
Lavender said:
Oh my goodness! Everything you guys have mentioned I live every day.....just yesterday I saw a new neurologist as a a primary as I still have Dr Perlman at UCLA. Anyhow this new one suggested I see a psychologist and a physiatrist!! Really?! Is this in my head? Yeas in my cerebellum, I was shocked and offended at the same time. But I suppose going from running to a wheelchair cohd cause the need. I am emotionally drained, moody and confused MSG of the time.....concentrating is so difficult now.
After we eft the Dr. We went to Cosco to shop. I was in a motorised cart, and it appended. I began feeling like I was going to faint then suddenly the tremors got crazy and my face began to contort intoa position that nearly through my lower jaw out. My body started to contort and my leg and arms pounding down hitting what ever was there. Imbarrassed with my family, my 10 year old daughter, we raced for the exit......
I couldn't speak, I couldn't, move, and without the Attavan I could feel everything this time. Painful, contortions and violent tremors that lasted the entire way home in the car. 45 minutes later we were home and everyone wanted me to take an Attavan and I wanted to stay aware and not drugged out so I could know. It was horrible! My family said it was not as bad as it USA.ly is, that most of my episodes are 10 times worse! Really?! I have been kept on so many drugs that I don't remember....thank goodness!
My emotions are up and down, I'm exhausted, sore and sad but thankful it was ok. This morning... My speech is off and my eft leg is so numb, I can harly move my toes.
Yh I no my mum had four kids n we all got diagnosed, my twin sisters were worse and sadly died at 25. My eldest sister and I are hoping and praying for a cure, i was told that 50% of my mums children will be diagnosed that a lie.
my mum 1st notice my symptoms when i was carrying a drink,and my hand started to shake ,then we found out i had a tremour,ive got friedreichs ataxia and was diagonosed a while ago ,im 25 this month and doing quite well
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!
I like it…it’s what I say too! I hope to get the green light to begin physically therapy. I have been so bad this past few months that the doctors didn’t want me to even have physical therapy. Thumbs up for good news on Friday. Ill find out what type and if its genetic too. For now it’s ‘Myoclonic dystonic Ataxia’.
Yesterday this new primary neurologist said that Ataxia is a symptom not a diagnosis! What? Am I wrong for feeling she is way off?