Long Time Lurker, Long Term Symptoms

[JakeJohnson2k]

Hi All,

I've lurked here for a couple of years, but after seeking help EVERYWHERE I've finally decided to post.

I'm currenty suffering from HA.

My symptoms are:
Feeling of poor coordination
Stiffness in hands (mainly left)
Feeling of poor balance
Shaking (mainly in hands, mainly left)

Aside from my symptoms, I don't "feel anxious". But when I notice a symptom, I get very anxious. I've had similar symptoms for a couple of years but they change slightly, so if I went to the doctor each time I had a new symptom I'd be there every few weeks.

I have the compulsion to check my coordination and shaking 24/7. It impacts my sleep, my enjoyment of life in general.

The compounding context to my HA is that my cousin suffers from Spinocerebellar Ataxia. His decline has been drastic and heartbreaking to see. His rapid decline was the trigger for my own HA, and as it is a genetic disease I have fixated on it. (Prior to my cousins illness, I believed I had a brain tumour or MS).

I now find it very difficult to convince myself I do not have this disease. I have seen many GPs (though over a year ago) and also a specialist. I saw the specialist approx. 12 months ago and he tested my balance and coordination, before concluding I had anxiety.

What can I do to live with this?

NB. Although the ataxia is genetic, it is still incredibly rare. Both parents must carry the gene, and there is no other instance of ataxia in my family or extended family. It is also untreatable, as far as I am aware.

[BazB44]

wow Jake I could have written this myself. Ive had anxiety for over 20 years, and every year I get something new. But the past year and a half have been terrifying, impacting quality of life. I sit here typing just fine, but it feels like my fingers and arms are shaky and uncoordinated. I walk to the car or mall and Im off balance and feel like I will tip over...daily. I do get stiff feelings in hands, I shake all over it seems. I stand in line at a store and my legs shake I feel like I will tip over. I also talk and it seems like I cant get the words out of my mouth, or like my tongue is enlarged or have a lump in my throat....but you didn't mention those.

I too don't feel anxious sometimes but still get symptoms. One thing to remember is that just because you don't "feel" anxious, it does not mean your body isn't screwed up. Our bodies are screwed up by our anxiety. Our oxygen balance is off, our nerves are messed up. It takes a long time for our bodies to repair.

So what do I do to fight it? I watch my breathing and posture. I get so anxious walking from my car to a store or library so I will make sure I walk upright with my chest out and shoulders back with head up, I will take deep breaths in and out. If Im standing in line I do the same.

Typing, talking, walking should be natural movements. When we start to think about them too much, we screw up the "natural" process if that makes sense. Its all extremely difficult, deep down inside I know its anxiety but its hard to accept it and move on. I mean, that's how we anxious people live. But I try to remind myself that my body is on high-alert and just needs repair. I was doing good a few months back I was drinking coconut water every morning (electrolytes) and felt better. I will go back to doing that.

[Blonde123]

Hi jake.
I’m the same and most of us probably are. We fixate on a symptom, it goes away until the next and on it goes. Like you I don’t have anxiety until I get a symptom but for me the symptom has to be constant for a period of time. I’ve feared skin cancer, breast cancer, I had headaches and now I’m worried about something completely different. The first 3 things I went to the Drs about and all ended up being nothing. I haven’t gone this time because I’m actually quite scared to go unlike some sufferers who constantly go thei r gp. I’m sure neither of these options are helpful. To top it off I’m a nurse!!

[JakeJohnson2k]

Thanks guys, this really helped. I can logically look at myself and say I know it must be anxiety, I'm weightlifting and playing the piano most days, I wouldn't be able to do that if I had a serious neurological condition, but of course our minds aren't quite sane.