A Little Nervous

I am a little lost. I am newly diagnosed (but still have more testing to confirm) and have been living with symptoms for over three years.I have thus far been “diagnosed” as suffering from anxiety, atypical Parkinsonism, MSA and now…possibly…cerebellar ataxia. Whats next? Does everyone go thru this diagnostic nightmare? MRIs, NC studies, EMGs and neurological exams…worn out. Any advice?

Negativity is stronger than positivity. If you dwell on the problems, you'll drown in negative emotions.

I found that ignoring the problems and accepting that everyone has problems is what got me over it. Pursue a positive future, keeping in mind that you have limits...like anyone else. Don't give those limits a name, like ataxia, anxiety. That gives them power over you. They're just 'limitations'.

I know, easier said than done.

I made this video series to spotlight people who accomplished this way of thinking:


Hi Worn out

Been through it all.Don;t forget your mental health as well. It is just as important.Concentrate on whatt you like doing and you can survive quite happily.

I have went through the dionostic minefield ,I have genetic ataxia first noticed when I retired 16years ago we then checked back and found that my three uncles staggered progressively ,nothing Mutch has been done,except physio which does help

Stave off the inevitable .Go to as many clubs as you can in your area,your occ/therapist will help

Hi Don

Hang in there! My diagnosis took several years. I suspected it was a result of my thyroid problems which I've had from birth but was told Ataxia from Hypothyroidism was so rare it was unlikely, several years later quite by accident someone sent me copy of a report they had got from my neuro in order to get me funding for a communication aid and can you guess what it said? 'Ataxia due to Chronic Hypothyroidism' but at no point did they write to me tell me I was right, apologise or anything.

I found exercise has helped me so I do my own thing I got fed up of their negativity and lack of support. I have managed to get back some mobility I was previously very close to losing. I am not on any medication for the involuntary movement but have reduced them by an intensive passive training routine after reading research on Parkinsons patients with Dyskinesia's (involuntary movements such as athetosis, tremor, chorea etc).

I'm a firm believer in the brain's ability to make new neural pathways (check out my post on Neuroplasticity) as you are very early in the diagnosis it would be the best time for you to start.

Hi Don

Your doctors seem to be working hard to give your symptoms their proper title. I can sympathise with how you are feeling at this moment.

Anyone who says 'go with the flow' is talking out of their backsides! But keep strong and keep in contact with this website. There are many people out there with positive thoughts and advice, of course including Glenn and Marie. Especially on not so good days! Look out for Alan Thomas and Patsy Riggs

Love and light


Hi DOn,
Do not take the doctors seriously and literally. I strongly beleive that the human mind can be retrained and it is the question of effort and determination. I suffer from CA and I am working in retraining and I feel better. Little drops of water make a mighty ocean! Little effort and you will see the road with light tempting you to travel with great spirits. Try. Never give up. Good luck.

I completely agree with the first reply by Glenn. This is my new life and for me, testing was a mute point. There are things I can do to help the symptoms, namely exercise, living gluten free, and my herbs. In my life going with the flow is critical for me. You have to find what works for you, and not let the negativity of others dictate your action. Most are scared when they first start on this road, but I have faith you will figure it out and do the best things for you.

I think all of us with ataxia have gone through it. When I was first diagnosed I had a lot of vertigo. They kept trying to tell me it was my ears or an inner ear problem. I went through so many ear and eye tests before they would even admit it might be coming from the brain, then they tested me for everything under the sun including MS, Vitamin Deficiencies, Parkinsons, etc. They still are not 100% conclusive as to what the cause is, but it doesn't matter now. I like the advice given below - we can't let our diagnosis rule who or what we are. At some point we learn to live with what we have to work with and make the best of it. If there are treatments then YEE HAW, and if not - well, start trying to see if your diet has any effect on your symptoms. Sounds crazy, but you would be amazed at how many people do have symptoms because of diet. I am gluten free, dairy free, and now egg free. I have Celiac Disease, but am allergic to the last two. I did not know I was allergic until I went off of them. Now I can't tolerate them in even small amounts, and my ataxia will get worse if I do... So hang in there! It is very hard at first, but try to find things to distract you from the medical tests and what doctors tell you that you can't do.

Hi Don just wanted to say hello and add my encouragement .. I am 70 this year [November] and still walking albeit with two fischer sticks.

I am coping with anxiety and fatigue by pacing myself and not trying to be all things to all people,

As long as I can spend a few hours playing with my three grandchildren [under 8's], I am happy.

I dont 'expect' family and close friends to understand [except my husband] but rely on forums and support groups.

I dont have much faith in the medical profession but am happy to accept any support they can offer.

Just remember to smile.

Take care, Patsy :)

Hi Don,

My daughter has CA & like all the others has had many tested. Each new test & possible diegnosis brought more anxiety. She is now 6 & we still don't have a cause but many conditions have been ruled out & therefore easied our minds slightly. I hope by having the tests you become less anxious. I try to encoursge her to do the best she can everyday. I frequently try to encourage her to play with other children & just because she is "wobbly" doesn't mean she can't join in. Perhaps you should concentrate on what you can do.

Good luck, hope you can stay positive.

Thank you all for your responses and positive words of encouragement. Many of you mention diet as a means to ease symptoms, and will research that approach…certainly can’t hurt! Thanks again and will keep you posted on my progress. Don.

you've only just begun -go with what sufferers suggest- try anything once-it might just work for you too

Hi DonF,

I was diagnosed with cerebellar ataxia 8 years ago (unknown cause), although obviously had symptoms before that. I went through A LOT of testing and was worn out and had anxiety...I believe anxiety is a "normal" feeling. I was relieved though, to find out what was wrong. Exercise and diet have helped me more than anything! Even though difficult at times, keeping a positive attitude has been key also. Focus on the things you CAN do, rather than what you can't do! And always remember DonF, you are not alone in this.You'll always have support from people on this site. We all have different degrees of ataxia, but we understand!!! I'll keep you in my thoughts...

Hugs, Rose :o)

I agree Countrycat, physical therapy has helped my ataxia the most! I don't go to pt now, but continue to do the exercises (for strength and balance) at home.

Hi Don, I was mis diagnosed for years until I got one that freaked me out so bad and made me go to the Mayo Clinic in Minnisota. I always heard people go to Mayo when they can't get a dianosis. I went thru a sseries of invasive testing just to find out I was classified as having Sporatic SCA. Which means I'm in that group that there isn't a test to find out a number etc. So I choose to focus on what I can do and not what I can't do. This thought actually helps me keep pushing myself to do more with baby steps daily.

I too am Gluten free (have been sincce 2006), refined sugar free, alcohol free (I've read alcohol helps kill brain cells. Since I'm trying to rebuild mine I don't want to disterb any that I have), no preservitives or additives (nothing in a bag or box), I make sure I drink 8-10 cups of water (keeps every organ running better) etc. I have been doing focused movements (exercising-body mind conection and cognitive thinking going) Yoga and Pilates along with the Wii Fit Plus for balancing etc. I find it a full time job!

I just saw my Nerolgist and from keeping trac with my MRI's it looks as though the degeneration has stoped and the cells in my brain seem to be getting stronger and compansating for the one's that are not working that degenerated before. So I have to continue this focused health path that I'm on. It brings resultse.

I think Dr's can only give you so much information or help you so much, they are just limited. I believe that I know my own body how it feels. So working with a health team (diffrent Dr's for diffrent things) and really trying out their advice are working for me.

Good luck on your journey. For me when I started focusing on what I could do and my food, and movements I don't have time to think about what I can't do because I have to stay focused doing more for my brain's health. :0)