Does anyone experience strange neurological... - PBC Foundation

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Does anyone experience strange neurological symptoms

Gra79 profile image
13 Replies

Does anyone experience strange neurological symptoms I have PBC/AIH but exp distorted movemnts ie park car pull up handbrake- go to get out of car- but feel as though car moves but it hasnt as brake is on!!! Sometimes I feel as though i am cross - eyed or have pressure/fatigued eyes. Might be totally unrelated but will be talking to hepatologist in Jan about it. Just curious if anyone else exp similar strange symptoms?

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Gra79 profile image
Gra79
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13 Replies
Neata profile image
Neata

Hi

I hate to say this but that sounds normal to me!

Neata

exy21 profile image
exy21

I too have aih/pbc and for years have been having feelings like this to the point of extensive testing and they find nothing. Just another set of symptoms methinks

Val02 profile image
Val02

Yes I do quite badly. I get pins and needles in my hands and feet, burning sensations anywhere. I feel like Im moving when im not. Headaches almost daily/nightime, jerking limbs, muscle spasms, RLS, rib pain, eyes keep playing me up etc etc. Been to neurology and had a MRI scan on my brain which showed up some minor abnormalities consistent with MS: HOWEVER the neurologist said he was not giving me a diagnosis of MS but let my doctor know if things get worse. He gave me a prescription for trazodone to help me sleep and for the RLS and suggested I might be depressed because of all my medical problems! Well the trazodone stopped the RLS and I am sleeping much better but not very happy with the wait and see approach.......

I didn't realise the pain I get in my eyes could be related, I thought it was something to do with using the computer to much as i get pressure from behind the eyes as well, I also get a foggy effect sometimes when I get the pressure,

Val02 profile image
Val02 in reply to

Linda you should get your eyes checked at the GP'S. They always like to check for swelling behind the eyes if your eyes are playing up. (saying that mine always look fine).

zipitydoo profile image
zipitydoo

I think Strange is my middle name. For a while now tremmors have woken me quite a few tights. Now the tremmors dont seem quite so bad but more noticeably when I wake up with it my eyes seem to be darting from side to side with no control ove them at all. Only lasts a few seconds then I go back to sleep. This is now nearly an everynight thing.

The other thing is the pain in my legs. Its like the shin bone in both of them. When they get warm in bed they really really hurt, a bit like they are badly bruised and someone has just run over them with a truck. The only way to stop the pain is to uncover them and let them get cold.

I will ask my GP next time I go, as I said I haven't bothered before as I thought it was being on the computer too long as that can effect your eyes.

Zippitydo I get the pain in my shins as well but for the last few days it has been more on my knees and fingers and always in my feet and hands, not good when you have a house with three floors :o)

zipitydoo profile image
zipitydoo in reply to

One set of stairs is certainly enough for me. I have raynauds so my fingers are swollen and stiff and dont like the cold at all. I also have swelling between my knuckles but not sure what that is to do with. When I get in bed my feet are like two blocks of ice. Then as my legs warm up the pain starts. Cant win.

Gra79 profile image
Gra79

thanks for all thew replies girls!!

Yes its all very strange & vague!!!

I also have sore hands &feet & knees, eye twitchs live in a foggy state for half the morning!!

I also get strange feeling like being paralysed in the morning when I cant move my legs after a deep sleep till i am properly awake!! Takes what feeels like a minute or two to come around!!!

Alot to tell the doc next visit :-/ Might insist on MRI + Neurology referral any one had one??

Gra

zipitydoo profile image
zipitydoo in reply to Gra79

I had an MRI brain scan early on this year. Was told that everything was normal for a brain my age (51) Have had nerve conduction tests because of numbness and tingling but they came back ok aswell. Also had a bone density scan which was fine. Doesnt make any of it any better and certainly didnt come up with any answers.

Good luck and let us know how you go on.

I have had a bone density scan and was told I have severe established osteoporosis, I also had a MRI and a couple of cat scans, nothing showed on those apart from a lump low down that they thought was Lymphoma and they said they took an ovary out but I didn't have one so I have no idea what they took out, probably a swab from my last op :o).

Was also told Osteoporosis does not cause pain but the drugs they feed you for it does.

Alley27 profile image
Alley27

I have AIH/PBC also and suffer with unusual cramps from my whole forearm whilst pulling bra strap on to my fingers to such extent that I drop things; brain fog, sore elbows. night sweats from waist up (not hormones am on hrt) and a whole host of other unusual symptoms, if that is what they are. Am totally fed up with it all and to top it off I refuse to go out because of the way I now look because of medication (Steroid weight gain, cretinism - moon face) I do not recognize myself any more in the mirror and to make things worse a friend of mine who has not seen me in person for 6 months did not recognize me when we bumped into each other in town just before christmas.....that was so embarrassing.....makes you wonder how they can prescribe these medications knowing what they can do to you...it's about time we had other medications to try me thinks.

Mummajo67 profile image
Mummajo67

I often have the feeling of being disorientated ie:- like getting off a fair ground ride, pains in my eyes and blurred vision, GP has said its all quiet normal !!!!! although I do wonder.

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