Memory: Hi all For the last few months I have... - PBC Foundation

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tinajohnston profile image

Hi all

For the last few months I have started suffering with some memory lost its not too bad only the odd thing or two like thinking did I already say that or did I do what I said I was going to do! I have also suffered alot of dizziness been to the doctors who then sent me for a MRI scan results good found nothing but I am just wondering if these two issues can be symptoms of having PBC and if so does that mean that these will never improve and will always suffer from them. Do anyone else have issues and if so have you been able to get any medication or advice on what can be done.

Thank you


10 Replies

Tina, Brain fog is the worst!!! Some days I wouldn't know my name if people didn't call me by it. My first Hepatologist did not believe in brain fog. He also did not want to do a biopsy, saying he would treat me the same if I was a 1, 2, 3 or a 4. I was DX in January 2018 with PBC & AIH. My levels hardly went down over 6 months. I switched Hepatologist. My new Hepatologist did a biopsy I am stage 4, she put me on Oclavia numbers are already better in just a month. She also understands brain fog.

Dizziness is another issue I have. I fell in January I blacked out fell & broke 3 ribs. Ended up in hospital that's when I was DX with PBC & AIH. Still haven't been able to figure out the dizziness. I have blacked out 3 times since this year. First time fractured 3 ribs, 2nd time fractured tail bone & 3rd time fractured sternum. Hoping to figure it out.

I fall pretty regularly. My family says I'm just not paying attention. I try very hard to pick my feet up. In Aug. I fell 4 times. This is so imbarresting because everyoune hold my arm when walking. The sister that us always worrid about me fell face first. She said she was so embarrest, i told her, welcome to my world. Next appt. I will let my dr. Know. So far, Sept has been a good month. No falling.

I was getting a lot of itching a couple of years ago, and have been much more fatigued and easily confused in the past 6 months. For me what has helped is to get extra rest and to be careful of too much grains, especially super glutinous bread, like a pretzel roll. One time I had two pretzel rolls in the evening and felt so foggy and dizzy the next morning in yoga class. So for me food plays a part. I think the additives in modern breads and packaged foods have a weird effect on my immune system.

liver-bird profile image
liver-bird in reply to Lisabette

I too was reacting to bread and it turns out I have coeliac disease and no longer eat gluten. I feel much better. Coeliac is another auto immune problem and if you have one you are more likely to get others. Just thought I'd alert you 😀😀

Lisabette profile image
Lisabette in reply to liver-bird

I’ve been tested and it was negative. But I may get retested at some point.

Hi Tina, yes i do have memory loss. I am 63 and this is horrible. I've gotten to a point to where i don'teven ask my husband " have we seen this show before". My sister and i talk alot and she always says, don't u remember u already told me that. Numerous times this has happen. It's embarrassing, i just try to joke about it ,but really it bothers me. Thanks for sharing....

I had severe brain fog for years. Being completely off gluten and taking a supplement called Neuro2 has helped enormously!

I'm "ditzy", as my husband lovingly calls me. I've been this way as long as I can remember. I get up every morning before anyone else and I pack him a lunch, cooler of water, get his clothes ready etc. Yeah 1950's housewife stuff but I love it and he puts up with my ditzy, brain fog moments. This very week I started filling up his water jug with ice and the almond milk I meant to put in my coffee. I caught that mistake myself.

I've packed him sandwiches of nothing but bread, left the wrapper on slices of cheese... you name it. Embarrassing? Yep. I just figure that is how my brain works. *shrug*

I fell last night. My body aches today because if it. We say i'm "as graceful as a drunk duck." To be fair, the floor was wet because we got caught in the rain on our evening walk and had just got inside. I was carrying my one year old but did not drop him or let him hit the floor. So scary though. I like to think it was just the floor was slippery because of the water but hearing everyone else falls makes me wonder.

I'm super dizzy these days but I think it is related to tapering prednisone. I don't have any advice or anything. All I do is take it day by day and try not to think about it too much sound like the perfect 50’s wife! Sorry you are hurt! Hope you are feeling better.

I am dizzy sometimes but I think it is from sleepless nights because my mind is working over time.

I just recently started forgetting things or have confusion at times. PBC AIH overlap syndrome. Diagnosed Dec. 2017. Stage 3 but I understand that can be subjective to where needle went in for biopsy etc. When I shop I have started to take a photo on phone of where I parked! Or I jot a note on my phone telling me, "lower level-exit by shoe store". It's helped. My job has been stressful so I think that is contributing to it.

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