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Ataxia Support

Hi, I’m Karen in CA with sudden onset ataxia

#1

Hey everyone. I’m Karen, a 48 year old mother of 3 (ages 14, 16 and 17), wife of 21 years, special education high school teacher, devout Christian, lover of Keto diet and had been in my best health though 2018.

Was physically great before having abdominal laparotomy in January 2019 to remove an ovary and large cyst. Ever since then I’ve had symptom after symptom develop over a couple months time. Am now using a walker as I have newly diagnosed ataxia. I take strong medication to deal with total constipation. I was also quickly diagnosed with fibromyalgia as I have body pains and fatigue.

Something else:: I was a special ed high school teacher for years. Had to take 9 years off due to a bipolar diagnosis and complications. Symptoms subsided and I was able to return to part time substitue teaching in the high schools. Was just offered a full time special ed position, and after they held it for me waiting to see if i would recover from these new symptoms, i had to finally turn down the offer as i realized i was not getting better.

My neurologist did a brain MRI that came back normal so he said come back in a year if you’re still having symptoms and I’ll redo the MRI. He has not been helpful in looking for other causes to identify what type of ataxia I have, so I finally made an appointment with an ataxia specialist with higher hopes.

Happy to have found this great group. My best to you all.

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#2

Hi Karen and welcome! I don’t know where to start? You’ve certainly have a lot going on! This is a good site to source information and ask questions. I’ve only been using the site for awhile but I have learned there are a lot of well informed people on this site. So good luck finding some answers.

#3

:slightly_smiling_face: Hi Karen, welcome. It’s not unknown to Acquire Ataxia after trauma, illness, reaction to medication…just to name a few. It’s always possible that’s what happened to you, and you’re doing the right thing getting a second opinion. Being seen by someone who actually specialises in Ataxia is always the best option. There are unfortunately a wide variety of types, and it can take an expert to differentiate them.

For the future, you may find that the Ketogenic diet stands you in good stead, several people find it’s beneficial for ataxia, but of course it very much depends on the individual. And, if you’re used to an exercise routine, carrying on within caperbility is always going to be helpful in maintaining muscle strength, which is something we all struggle with.

It’s helpful to know, not everyone has exactly the same symptoms, or progresses to the same degree, even if they have the same type of Ataxia. But generally speaking, many of us struggle with constipation, painful muscles and overwhelming fatigue…

And, you can find helpful general information on www.ataxia.org including links to Specialist Neurologists and Ataxia Support Groups.

:slightly_smiling_face: Ataxia is never welcome, it can appear just when ‘things are finally going right’… But, here, we all totally understand the symptoms, feelings and friustrations that go hand in hand with the condition, you can ask anything, or simply vent if you need to… :slightly_smiling_face: xB

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