PBC Foundation
6,277 members5,557 posts

Balance problems !!

Does anyone have problems with their balance ??

I have PBC fibromyalgia high blood pressure and cervical spondolitis fusion of the lower spine.

But I have balance problem and have weird feeling in my legs my right one is numb from the knee down and both legs are very weak I find it hard to het out of a chair and at night it feels like something crawling underline my skin in both legs and they twitch a lot.

In 2010 I had an emg test carried out and the consultant conducting the test said all my muscles showed signs of demylation he said all the nylon sheath that covet the nerve endings where damaged

When I saw a neuorologist he just said the machine was faulty!

I was do gob smacked o didn't say can I have a retest

I have asked my gp to refer me back again recently as the numbness is getting worse but have heard nothing.

Has anyone got any ideas ??

I am so mad because the consultant doin g the test said he couldn't tell what was causing it but it was not right and gave me a copy which I gave to my gp as he hadn't had a copy

What else can I do ???

14 Replies

Hi Cowren,

I think I mentioned in another post somewhere on here that i have developed a problem while driving round bends. i have to really slow down and lean over like on a motorbike or I dont feel safe. I presume that is a balance issue.

i also get numbness in my legs but mine is above the knees and its when I have been stood a couple of minutes or walking. When I sit down again the feeling returns.

if I was you I would ask to be reffered back so they can perhaps try to sort the problem out.

i also have fibro.


Thanx zipitydoo

I am going to push again nxt time I go back to drs I will ask them to Ho through my paper file and see if they can rewuest another emg test.

Also noticed my phone has spell checked wrong again it is not a nylon sheath over your nerve endings is called a mylin sheath !!

With fog head didn't check it over before posting ,:)


Yes I have the bug crawling thing, twitching (i think it is RLS) and numbness and tingling in both feet that comes and goes.

Check out the post....IS THERE A CONNECTION TO PBC? If you have not already done so. I think you will find the answers you're look for.

Best to you.


Thanks Kosy 2 nice to know I'm not alone or going mad interesting when you read PBC is there a connection so many of us with the same symptoms does help coz you think your going mad !

Especially when everyone at work keeps saying you kill so well ::)


I think the way you have been treated is a disgrace :(

I have RLS, but I also have balance issues, tingling in fingers, muscle and joint pain and one of my big toes goes numb, the numbness is not there all the time but does happen several times a day,however, i have also had surgery on my cervical spin (have titanium cage around C5,6) and doctor does not know if balance and numbness is due to residual symptoms from before op or related to PBC,however at last appointment which was a few days ago she said she thought the pain was more due to the neck surgery but at the same time she admitted shes not totally clued up on pbc so was not 100% sure.

I hope you get treated better in the future and get the answers your looking for :)


Catherine69 thanks for your reply nice to hear a Dr or consultant admitting they ' not clues up '

I'm fed up now but after reading other comments I now have the confidence to go back and say that its NOT IN MY HEAD



Tingling and vibrations in feet and legs, to the knees. VERY annoying and hard to ignore.

Thanks, Kosy2, for mentioning your previous post. I didn't get email notification of your question or the 45, very interesting, answers. It was probably my iPad, or my marshmellow brain!

Cowren, sure hope you get better care and find answers to all your health concerns.

Best of luck to you....


My husband who has had a cervical fusion of 2 disc in his neck, has numbness yet in his fingers.He of course does not have PBC. I think my dr. would tell you that you also have RLS of your legs. Your neurologist needs to see you again, for I don't think you have been treated fairly.

Wishing you were well.



Thanks Magnolia for your wishes

RLS is something I have had for a number of years even before my PBC but just seems worse now because of the never ending fatigue

Sending you hugs back to you and and your hubby


Ps going to pain clinic soon so hope they do nerve block injection for my neck and lower spine Xx


Yes I have balance issues and numbness and tingling in lower legs and feet that comes and goes. I have leg cramps that come and go at night also, but I take a homeopathic leg cramp pill with quinine and keep a bar of ivory soap under the sheet at my feet.



Thanks for the tip I will see if i can find some ivory soap.

There is nothing worse than laying in bed totally fatigued and your legs ate doing a tango of their own accord !!

What is the herbal remedy tablet you take with the quinen in ??

Sending you hugs XX


What does the bar of Ivory soap do? Also, I remember years ago (30) I suffered with leg cramps almost every night. Then I read that a pillow placed between your legs would help. I got a body pillow and could count on one hand the night I have had since.


The leg cramp pills are by HYLAND and the ivory soap is an old wives remedy that works. My mom uses it and started me using it. Also she puts vicks vapo rub on the bottom of her feet before she goes to bed and then socks. She had neuropathy from diabetes and now doesn't. The Hyland's pills are made in usa, little white bottle with red label. Good luck.


Hello to all with balance problems. This may be of some interest:

First I should say I have Systemic Sclerosis. I am into the twenty- second year. Also have damage in my cervical area and a prolapsed lumbar disc and, spinal stenosis.

About two years ago My toes got numb and bending forward I would lose my balance. Now, the numbness is affecting my entire legs and balance has become a serious issue for me.

Whilst in The Royal Free I tested positive for Romberg's . The loss of sensation via other tests proved my problem is very seriously debilitating. I do not venture far alone and never use public transport. I have fallen several times, and am clumsy as I can barely feel where my feet are going.

I recently had an MRI to see if Sclero' was affecting the cerebellum section of my brain. It was not. But my consultant said it is attacking my legs and it is a neuropathy problem.

I have been granted funding for IVIG. ( immunoglobulin transfusion- which is plasma from blood donors with a healthy immune system. ) but I have been told it may not work.

I did post a question this week asking if anybody else has received Immunoglobulin and the end result of this treatment. So far, I have not had any response to this.

I have posted here because it may help some of you to bear in mind that Scleroderma can cause a problem in the legs.

I will post again in several months time. ( the treatment is 3 days IV every month over several months) to let the result be known.

The quality of my life is deteriorating beyond which is tolerable and I feel rather housebound since I live alone now

My sincere good wishes to all. Enjoy what promises to be a glorious summer.


You may also like...