PBC Foundation
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Update after seeing neurologist today.

I saw the neurologist today regarding my memory/concentration issues that I told the hepatologist about.

The neurologist did not think that they were liver related as that usually comes at the later stage. He also didnt think it would be related to the fibromyalgia as he dosent see that as a real illness just more like a label they give you when they have run out of other things to diagnose you with.

So he is booking me in to have a scan and sending me for some other tests and will take it from there.

I have also been having issues with driving around bends for about a month now and its gradually getting worse and really frightening me at times. I lean over to take bends and slow right down but still feel like I am going to crash. i told him this and he just looked at me.

i am probably just going round the bend. :-(

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Thanks for the update. Sounds like you didn't get any real answers. Hopefully the new tests will be helpful.

I hate when you ask a question and the doc just looks at you. At least they could say "I've never come across that before". That "look" just makes me feel like they think I am crazy.

The going around bends thing... could it be a balance problem?

Keep us posted

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Hi Kosy,

No idea at all about the bends problem. I have no problem with balance when walking. I thought it might be to do with the mind going back in time to when I used to ride a motorbike but have no idea why it should. its an awful feeling and makes me dread driving.

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Hi Interested to hear how it went with neurologist, as Ive got my appnt next week.

Ive developed several neurological symptoms and just want someone to explain what is happening to me.

I would be interested to know what tests you are having?

Incidently my symptoms are memory problems, restless legs, twitching, constant pins and needles, trouble sleeping, headaches behind the eyes. My GP referred me as I am getting a bit of a collection. I do also have some very strange moments... only yesterday as I drove along I saw the 30mph sign and couldnt remember where the speedo was on the car to check my speed. It is starting to get a bit freaky.

Good luck with the tests, hope you get some answers.

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Hi val, i have all of your symptoms and strangely enough exactly the same thing happened to me with the speedo, it scared me a little. When i am going on a journey i sometimes have no idea how to get there even though i have driven there many times before. I have never mentioned any of the symptoms to my Gp or specialist because i feel they brush off the illness and think i am making mountains out of mole hills. Its sad but i just have accepted tin fact that they don't really know the answers to all our symptoms so we then spend our lives having one test after another.

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Hi Lisa

I have been for my neuro appnt now. He was very good and very thorough.

He suggested I went for nerve tests because of the pins and needles and weak reflexes in my ankles. Im having a MRI scan because of the headaches and he said he could look at your neck as well in case thats the cause, although he wasnt expecting the MRI scan to show anything, I think it was more for my reassurance.

He then sat back in his chair (like they do),and said I think many of your symptoms may be stress related with having to live with a disease like PBC which was not only potentially life threatening but with so few answers to your symptoms; he had my medical history in his hand and said anyone who has been through all this is bound to succumb so would I like to go away and have a chance to think about that. In the meantime coudl he have some blood to rule out diabetes, B12 defficiency and measure some chemicals to see if it was a PTSD type reaction I was suffering. I resisted the temptation to jump and and hug him, but at last someone who takes me seriously!

Who had thought I would be so happy to have an anxiety disorder. lol

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Hi,

I hate driving at night as I dont see well in the dark but had to pick my youngest up after a trip out with the school. Parked up, and the car in front started reversing back into me. I wanted to warn them I was there but instead of pipping the horn I washed the windscreen.

I cant remember what the other tests were. I think its at some psyc unit or other and presume its writtain/memory tests etc but will let you know.

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I find it interesting that some doctors don't believe that memory loss is related to PBC. I just read a great article listed as Auto Immune Stuff under the blog part of this site. It explains all of the symptoms related to auto immune diseases and the reasons for them which includes short term memory loss. I have printed this article out and am keeping it in my purse to show those people who think we are out of our mind!

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While it was a very interesting article Christine it wasn't writtain by a doctor. I posted it because a lot of the items were relative to us and the conditions we suffer.

Perhaps years down the line after lots more study is done into the condition they will find out it is related to the PBC but until they have medical proof they cant say it is.

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zipitydoo -

Have you ever tried taking a B12 lozenge? I was having sudden memory problems and one of my Drs. (I only have 6. haha) suggested that I give the B12 a try. It actually seemed to help and also helps with a bit of energy boost. Just a tho't. -:) ga

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Hi,

Thanks for the tip but I had my B12 checked when they found out I was anaemic and it was fine.

My problems have been going on and getting worse over the past 3 years. I am worried if nothing is sorted out soon another 3 years down the line I wont have a clue about anything :-(

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B12 has definitely helped my energy and memory. Hubby and I just went on a 5 day vacation in New Orleans. Drove 11 hours to get there and 11 hours back and I still feel great. I know I will probably crash when I go back to work tomorrow, but I take what I can get and this has been a great couple of weeks. Keep the faith. We are all in HIS HANDS.

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