Ataxia as a symptom: Scared

General
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My ataxia has yet to be diagnosed as a condition. It is still a symptom. A symptom I have somewhat embraced, not because I like it but because I own it. Not sure if I have been living in denial or just very positive which I am. But now after 3 months and a lll paperwork has Ataxia on it, I am moving into new territory.

Fear. Either imagined or real I am afraid. My other symptoms have worsened. More fatigue adding to my already tired ass at an incredible rate. Arthritic pain in hands and arms, one leg going numb the longer i stand. I am in no way looking or caring about a diagnosis here on this post. I feel comfortable here expressing my fear.

My ataxia has leveled out. Meaning I am still the slightly drunk ataxic (compared to the totally smashed drunk kind lol) But other stuff is getting worse. I fear MSA greatly.

I will make the best of today. Even if it means doing it frightened.

Thank you for reading. I can only act tough for so long. I am scared shitless.

1 Like
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I certainly understand your feelings as I started at the same point as you describe. Unless you have family members with ataxia, it is always going to be this way.

My fear was MS - I was told by neurologist, after extensive tests, that it was 95% certain that I didnt have MS. So I live with that uncertainty how ever small.

The only positive way forward is to live as healthily as possible with diet, exercise, enjoyable experiences and lots of laughter.

..and of course, this forum where you will find lots of wonderful friends.

Patsy

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I understand you. My ataxia has been called "mild" (NOT TO ME!) and I freak out at every change. A shrink has helped somewhat with pills and talk therapy. He says I have to cool it and stop thinking about grim scenarios. Two profs here (Israel) think in my case it is auto-immune related so they give me immune suppressants each month. (Given an an IV)

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Join the club!
We are all scared of the future
Ataxians more so !!

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I feel for you Peter. It can be pretty scary when you have these things happening to you and you have no answer why especially if there is no family history. I can only say get as much information as you can, don't give up on the doctors, get tested,tested,tested. We are all here for you so don't feel like you are alone, because you are not. Have a good day.

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My Neurolgist said only elements of MSA and that was different a year ago.He said the MSA was because of the rapid progression that is all.I have always had low blood pressure all my life-no autonomic symptoms at all.

Basically they use the word ideopathic when they don't know.

Don't be scared-I only have some of the symptoms not all.It is only a small part of the brain that may be affected.

We are all different-we have different diagnoses and prognoses.

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"Dont be scared" easier said than done. It's normal to be frightened of the unknown and ataxia is full of unknowns. N

Marie Turner said:

My Neurolgist said only elements of MSA and that was different a year ago.He said the MSA was because of the rapid progression that is all.I have always had low blood pressure all my life-no autonomic symptoms at all.

Basically they use the word ideopathic when they don't know.

Don't be scared-I only have some of the symptoms not all.It is only a small part of the brain that may be affected.

We are all different-we have different diagnoses and prognoses.

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Thank you everyone so much for your kindness. This new friend also seems to have another odd component, the day after a down day, at some point I get a little shall I say euphoric? Well I do and it's weird. It's not really a mood swing those are different.

Anyway Ya know If I didn't have ataxia, I could still get hit by a car tomorrow and you don't see me worrying about that.

Like always, Thanks for listening. To me that is the most important thing our friends can give us. I know you know we aren't always looking for advice or answers from our friends and family, just a set of ears and a few minutes does the trick and for that I am always grateful.

peace

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DEAR PETER,

ATAXIA IS A SYMPTOM FOR ALL OF US WITH SOME TYPE OF CEREBELLA PROBLEM......NO MATTER THE NUMBER YOU ARE. IT SEEMS TO PUT US IN CATAGORY......WHERE YOU CAN BE LUMPED TOGETHER UNTIL A NUMBER SHOWS UP-----MINE IS SCA8 WHICH MEANS....MINE WAS THE EIGHTH TO BE DISCOVERD ...I DO READ ALOT AND RESEAECH IN HOPES ONE DAY THERE IS SOMETHING WE CAN DO!! ALSO EXERCISE WILL HELP WHETHER YOU LIKE IT OR NOT---YOU MOVE A LITTLE BETTER EVERY DAY............................HOPE THIS HELPS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Peter Franks said:

Thank you everyone so much for your kindness. This new friend also seems to have another odd component, the day after a down day, at some point I get a little shall I say euphoric? Well I do and it's weird. It's not really a mood swing those are different.

Anyway Ya know If I didn't have ataxia, I could still get hit by a car tomorrow and you don't see me worrying about that.

Like always, Thanks for listening. To me that is the most important thing our friends can give us. I know you know we aren't always looking for advice or answers from our friends and family, just a set of ears and a few minutes does the trick and for that I am always grateful.

peace

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I agree with Pasty. My mother and my two sisters as well as me, had ataxia. I said had because my mother and baby sister are dead. It is understasndable to be scared but never surrender to ataxia! Live life to the fullest you are able. You can yeild to ataxia and feel sorry for yourself; just bearly existing. Or you can admit to your short-comings but still have a full life, and help those that we can. Because there is one thing I found out about life: no matter how bad you think you have it, there is many more who are in worst shape. We've faced some bad scrapes and will face more, but as long as you have hope and have faith and nothing will ever get you down.That is were "Living With Ataxia" comes in. We are there and are here for each other, whatever it takes.

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Hi - You have every right to feel scared. I have a load of stress myself. I read somewhere that happiness is being comfortable with uncertainty…and I have plenty of uncertainty material to work with.

For now, I try to stay “in the present” by taking a break from whatever I’m doing and re-focusing on my breathing. That, reading or watching something you find funny, and exercising seem to help reduce the negative feelings.

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I absolutely understand I’ve been diagnosed with ataxia except they say for unknown reasons you will have something we just don’t have a name for it I can barely walk are right scared s******* myself everyday I am thankful to be alive every once in awhile I have my drinking moments
Which does not help. Ever need a friend I’m on Facebook Lois sheehan

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Its been a rough couple days I admit. But here is the weird thing that I am suspect many of you will understand.

The waxing and waning of life itself

The way things always work themselves out

Ebb Flow

We always felt that a certain balance in our life was more harmonious and conducive to a life of well being... Most people would agree but for us our whole life, we thought we had a certain understanding of the universe. Balance

(I doubt this relates to all of you just a hunch)

As a child I liked to balance stuff, on my nose, toys and such. I liked shapes and the common thread of certain ones. Some sort of connection to what I don't know.

I thought I understood balance until I lost it physically. This word now has an entirely new meaning yet the same. But now I see it an incredibly different light.

Everything about my life from now on is about balance. (it really has been for all of us our whole life but now we don't take it for granted) Balancing my body, my emotions, my energy, my communication and mostly I have to balance my perspective. I take full responsibility for the perspective I choose. Some battles are tougher than others and I won't beat myself up if I lose a few here and there. I am an expression of this universe in the form of a conscious man.

Now, I am learning not to fight what is, not deny what is. I will never win the battle against uncertainty this has quickly become obvious. So what is left?

To just BE with what is.

That is now the challenge at hand. To just be.

I have thought that not knowing was important. Oops silly me, who am I to deserve a better clue on my fate than a physically healthy person? The universe owes me nothing.

Thanks for reading and hearing me unload. I'll be damned if I do not turn this into a gift, If not for me then someone else. I got work to do, get out of my way cause I walk drunk. LOL

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Hi Peter, I was diagnosed with ataxia 10 years ago and have gone through all the stages of grief, from denial to finally, acceptance. Acceptance has been rather refreshing! I'll never give up or give in though. Ataxia is frustrating and challenging! I will keep exercising for strength and balance and try to eat as healthy as possible, as that helps my ataxia more than anything. I spent too much time lamenting about what I could no longer do. Now I embrace what I can still do! I'm a positive person also, and realize although I can't control having ataxia, I can control my attitude. Remember, you are not alone in your journey! I hope you find comfort in that..., ;o)

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I’m a spoon guy. Exercise is a great notion but I have only X amount of spoons to spend a day on energy. I am currently on temp disability. I need to get back to work. So now I assume when I get cleared for a desk job, I ave to approach work differently. I now have to get to work as soon as possible. And from bed to desk has to happen fast to conserve spooks.

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It will happen…

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I am slowly coming out of the scared period. My CA is believed to be auto-immune induced. So far I have gotten 9 IVIg treatments. Am I better? Hard to say.. I walk briskly w/o a cane outside (for now); take escalators up and down (which I avoided in the past); stopped working; and read aloud 5 articles per day. I still freak out when I think that I have detected a change for the worse. I am writing to you from Israel, where there is no support group. I would like to speak to someone like me. Neta

Judely said:

Hi - You have every right to feel scared. I have a load of stress myself. I read somewhere that happiness is being comfortable with uncertainty...and I have plenty of uncertainty material to work with.

For now, I try to stay "in the present" by taking a break from whatever I'm doing and re-focusing on my breathing. That, reading or watching something you find funny, and exercising seem to help reduce the negative feelings.
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Hi Neta - I responded to your one post.

Hi Again Michael/Peter - Another thing that helps to counter anxiety, stress, or whatever is to write down 3-5 grateful statements and put them in a Jar O’ Joy -when you feel anxious, scared, or doubt yourself, you can review your Jar-O-Joy comments and observations.

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I get a letter in the mail today with my blood tests results, three pages of stuff I don't understand with a note at the bottom from my doctor, Blood tests normal~ Not sure how to feel about this.

What has just been ruled out?

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Go to a very good neurologist-dr. Sometimes labs are wrong or certain tests are not performed. Make sure you take the tests for every possibility. Try to find a dr who specializes in finding a correct diagnosis. Maybe at some university or Hopkins. There is also a place in CA.Be a nudnick Peter Franks said:

I get a letter in the mail today with my blood tests results, three pages of stuff I don't understand with a note at the bottom from my doctor, Blood tests normal~ Not sure how to feel about this.

What has just been ruled out?