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Ataxia Support Network

Here we go!


#1

Hello I’m Hannah. My (now) husband and I were thinking of children a few years ago. I was extremely overweight and had been thinking of bariatric surgery for years. I had many health issues and was unable to carry a child. I had surgery to remove a cyst on my ovary. The surgeon said, “If you lose the weight you will have children.” I started a diet and was losing weight. I went to a bariatric surgeon. I wanted a gastric sleeve. Because of my acid reflux he wanted to do gastric bypass. I gave in and had my surgery January 4th 2017. A few weeks later I was puking nonstop. I went to my local ER and was transferred by ambulance to my surgeon’s hospital 4 1/2 hours away. He thought I was some punk kid (I’m 27) and sent me home. Few weeks same thing. A few more weeks and still puking BLOOD NOW. ER and transfer. I had been a member of a gastric bypass forum. I searched for answers and found a lady with similar symptoms (legs falling asleep) who had a B1 (thiamine) deficiency. I brought this to my surgeons attention and he laughed at me. I requested a reversal. I had all nurses to back me up because this was my third time there. I woke up from surgery seeing double. I ended up with amnesia for 3 weeks. I was in a nursing home when my balance issues came up. I went home and started the search. I suffered from Wernicke’s Encephalopathy (thiamine deficiency). The classic triad is nystagmus, ataxia, and confusion. I just last month ended up seeing a NAF nystagmus/ataxia specialist. I’m at the stage of mourning my old life and getting on with it. I’m severely depressed right now trying to wrap my head around this all. In around April my ataxia started to bother me as I was wedding planning. I must admit I have read a lot on this site. I have to get into the mindset of “do what I can when I can” and not feel guilty or useless. I’m very thankful for this site as I have spent a lot of time here! :joy:

My symptoms are downbeat nystagmus, zero balance (furniture walk to walker), floppiness, clumsiness

I walk, talk, act, and feel drunk. This is my new normal.

PS-I’m 10 pounds under goal weight now.

My husband and I October 27th 2018!


#2

Hi and welcome :slightly_smiling_face: I love your Wedding photo (and recall previous correspondence ) and well done for losing weight, I know myself just how challenging that can be :grimacing:
No matter what brought us to this site, we’re in this together, we all know exactly what it feels like to contend with symptoms that are largely unseen and therefore often misunderstood.

I can’t imagine what it must have been like to experience blood loss in that way, truly horrific…it never ceases to amaze me the things that have happened to people.

On the plus side, you have found out what is causing your Ataxia symptoms, and hopefully have had treatment with Thiamine. We know that some Acquired Ataxias do benefit if the cause has been identified, and treated. Are you now on a maintenance programme with Thiamine :thinking: xB


#3

Oh Beryl! You helped me so much! I was literally in bed afraid to even move. I have been on 500mg thiamine since my injury. Thank you for the kind words! My husband and I have been together 7 years. I kept putting the wedding off so it would be perfect. I ended up getting married with ataxia. Perfect for us!