Anyone first told it was just anxiety?

I was just wondering what diagnosis(s) everyone may have been given before learning you had SCA? How long until you finally found out? Especially those who did not have a family member with the dx.

Even though I do have family members with this, I didn't pay much attention for several years. However, it was over 7 years ago when I was complaining about my balance, etc. I was being treated for vertigo and when I saw chronic anxiety in the (ENT) Dr. notes which I requested, I stopped going to Dr's for almost 5 years. Then I went to a different dr, a neurologist in 2013. He listened to me and sent me to Gainsville for a second opinion. Now my non-coordination, jerkiness, etc. has a diagnosis and it is correct. Unfortunately.

I have MSA and went to 12 different doctors before my diagnosis. It took over 10 years!

Unfortunately people judge one another. Feeling like your bring judged is normal because we expect that. I suppose it is when our own insecurities due to walk, gait, mouth/lip position, soft spoken, overly loud etc. is viewed as out of the norm.

Friends to this minute have not commented regarding my stature or walk, but I know it is different.

It has been said that people are "sized up" on visual only, some innate response to gender, age and frame or stature immediately.

To your point: All of this may lead to anxiety, especially when approaching a crowd while you are walking knowing all are watching. You may ask yourself if they are evaluating you, what have they heard in the gossip ring? He/she must be drunken. You may try several different strides to evade evaluation!

In the long run...judge their abilities when they are eighty. (at least thats what it feels like sometimes) Fxxk Em and the anxiety they promote.

As I said many other times, I had my first symptoms at age 11 - I am now 69 and still only told that according to my medical history it could not be anything but ataxia. Yet, I still have no official diagnosis because it is Episodic and never in front of the doctor. It is like nobody believes what I say. Medical professionals consider a patient NOT part of the team but the thing they work with.

Sad state of whatever this is.

Ataxia UK has contributed to research for 50 years now and the number of identified types of ataxia has increased from 60 to 90. It is not surprising that we all have different symptoms and diagnosis is so complex.

I am trying CBT for my anxiety. There is long waiting list [in UK] for face to face therapy on NHS so I have opted to try online therapy with telephone support.

I have only been doing it for about a month but the main thing that I have learnt is that adrenaline plays a big part in the sickness I have felt,

I am 73 next week and still walking with the help of a rollator. I take my health very seriously .. exercise most days and eat a healthy diet. Not gaining weight is the biggest and worrying problem [apart from controlling adrenaline].

Stay positive, stay safe and dont forget to smile. x

This complaint (of he original author) is the bane of my existence. My husband does not believe me or acts like there isn't anything wrong; he thinks I can exercise myself out of this. Maybe he thinks I am afflicted w something (he must!!!), but keeps it to himself. I went to private shrink who came to the conclusion that I need electroshock therapy to accept my fate. I refused. Didn't even know they did that anymore.

I was.

You were what????And did it help in any way??

Caitriona said:

I was.

I too have MSA. I was recently diagnosed (September) It came on literally overnight about three years ago, that I noticed a problem with my balance. I worked out for myself what the problem was, before seeing an inneffectual neurologist, and insisting on seeing an Ataxia specialist. Unfortunately they had a waiting list, so I wasn`t seen and properly diagnosed `till Setember last year with Ataxia, then more accurately this year. 10 yrs seems a little excessive, just shows how little Drs know about the subject!

Debora Warner said:

I have MSA and went to 12 different doctors before my diagnosis. It took over 10 years!

What is MSA?

bloodaxe said:

I too have MSA. I was recently diagnosed (September) It came on literally overnight about three years ago, that I noticed a problem with my balance. I worked out for myself what the problem was, before seeing an inneffectual neurologist, and insisting on seeing an Ataxia specialist. Unfortunately they had a waiting list, so I wasn`t seen and properly diagnosed `till Setember last year with Ataxia, then more accurately this year. 10 yrs seems a little excessive, just shows how little Drs know about the subject!

Debora Warner said:

I have MSA and went to 12 different doctors before my diagnosis. It took over 10 years!

i was diagnosed with anxiety also. i am a veteran, and have been told all kinds of crazy crap. i was once told my symptoms- vertigo and nausea attacks while losing the ability to control my body- were not even possible. dayton va doc once told me i was lying for drugs or money and he would not help me get either. luckily, about 4 yrs ago i got a new doctor that was a neurologist in civilian practice. he is the one who figured it out.

I was diagnosed 1 year before. I had balance problem for 3 years. But looking back, I now know I had other symbols way before imbalance, like, being stressful, insomnia, lack of energy, not good at sports,etc.... more than 10 years or since childhood. My type is unknown. 4 years ago, when I played tennis, I knew I needed to use turn and waist power, I had none, lol. Sadly

I was told it was anxiety, depression that was back in 2001, when the episodes of ataxia were off and on.Recently I was told I have cerebellar ataxia symptoms and I am seeing a movement disorder tuesday

Mine was episodic at first, and the only one who believed my symtoms were real was a research neurologist at university of Nebraska. Research doctors know their stuff!

Norbert N Steiner said:

As I said many other times, I had my first symptoms at age 11 - I am now 69 and still only told that according to my medical history it could not be anything but ataxia. Yet, I still have no official diagnosis because it is Episodic and never in front of the doctor. It is like nobody believes what I say. Medical professionals consider a patient NOT part of the team but the thing they work with.

Sad state of whatever this is.

Living alone at the moment in Portugal - and anxiety does play a prominent role in ataxia, for certain.

In the words of the fine Irish writer, John Banville - "The peasants stare like that, having no sense whatsoever of any affect it might ensue"

I call out in response,"zombie, campisito, lerdo/a, Fxxx you"

Philip

The last doctor appointment I had last week diagnosed me with stress. Looking back on the last 7 months, I could kind of see that. However, it made me feel like I was having the episodes on purpose and that I could control them if I wanted to. however, the "stress" diagnosis idea didn't last long because I was sitting down working on a project watching a movie. I couldn't get more relaxed than that and I was still twitching and jerking pretty good.

I think the brain is resposible for mood and movement. In my case they both seem to be connected. Thus I have Depression and Ataxia. Grim.



Marie Turner said:

I think the brain is resposible for mood and movement. In my case they both seem to be connected. Thus I have Depression and Ataxia. Grim.



Patsy said:

Ataxia UK has contributed to research for 50 years now and the number of identified types of ataxia has increased from 60 to 90. It is not surprising that we all have different symptoms and diagnosis is so complex.

I am trying CBT for my anxiety. There is long waiting list [in UK] for face to face therapy on NHS so I have opted to try online therapy with telephone support.

I have only been doing it for about a month but the main thing that I have learnt is that adrenaline plays a big part in the sickness I have felt,

I am 73 next week and still walking with the help of a rollator. I take my health very seriously .. exercise most days and eat a healthy diet. Not gaining weight is the biggest and worrying problem [apart from controlling adrenaline].

Stay positive, stay safe and dont forget to smile. x