Anyone here have issues with 'falling down' for no reason? (not slipping, or tripping over obstacles --- just going down?)

I've recently experienced a few falls, all of which have transpired quickly. When it happens, I feel as though my leg just isn't there. It's not necessary numb, though my left side has become less sensitive to touch, and it isn't because I've quickly gotten up from a sitting / kneeling position quickly or had my limb fall asleep. I visited my neurologist this morning and he's requesting I have an MRI and EEG next week. He didn't go into full detail, but mentioned possibilities linked to other autoimmune issues, ataxia, or possibily even my migraines. I do experience occasional blurriness, brain fog, vertigo and muscle-burning sensations as well.

8 Replies

  • My mother had these issues but she had a neuro degenerative disease along with pbc. She never fell though just started getting harder for her to talk, and walk in general. I dont think it was her pbc. I have noticed i have been dropping things more lately though

  • I had the exact same thing 2 years before I was diagnosed with PBC. My leg would just give out. I than started dropping things. I was tested for brain tumor, MS, etc. Nothing was found and for me it took a year for all my symptoms to go away. Several doctors decided that I might have had a virus that attacked my nervous system.

    I never found any connection between that and PBC. I know how scary it is. I would sit to go down the stairs so I would not fall.


  • I have Scleroderma and PBC. It began with Raynaud's 23 years ago. 2 years ago my toes began to feel numb even in hot weather. Then the numbness started spreading up my legs and more recently I lose my balance and stumble around , especially if it is dark and I am unable to judge distances too well. I have also had my legs give way from under me as if a sudden paralysis has occurred. I recently was diagnosed Romberg's positive by The Royal Free. This led to an MRI . It was deemed that the cause is autoimmune ( systemic Scleroderma). And the balance mechanism in the legs is not relaying messages to the brain . I await to hear whether IVIG has been granted by NHS England. This is Immunoglobulin intravenously given . It is expensive to say the least so I am not holding my breath. I do have quite severe back problems and spinal stenosis which is exacerbating matters but these are not thought to be wholly responsible for the - now very severe - problem s with balance. However, the Immunoglobulin has no guarantee to cure. I also read that the good effect will eventually wear off and that more will be needed at regular intervals.

    I hope your problem is sorted out. I know how disconcerting it is.

    My Best wishes to you and fingers crossed for you.

  • Hia Jenner Layne,

    I am going through "falling down" for no reason as well! I am really sorry to hear you are going through the same thing because it really is horrible, I feel such a fool, but glad to hear I'm not the only one!

    GP has me going for tests on my heart, which initially scared me stiff! But I can't help thinking it's just ANOTHER symptom of PBC.

    I also get migraines, muscle pain, etc. but for now, seem to be over dropping things. I have noticed less sensitive areas of my body, though like most symptoms of PBC, it seems to pass or move after a few weeks.

    With you going for neurology tests & me for heart tests we should compare & swap notes!

    Good luck!

  • Oddly, I was tested for my heart last year which also scared me given my dad passed away from years of heart complications. I had been experiencing pressure in my chest and mentioned this at the Rheumatologists office so he decided to first test my oxygen levels. As the nurses walked me briskly around the office, my oxygen kept falling into the low 90's/upper 80's and I had bouts of turning blue in my limbs (different than my Raynaulds). I returned the next day for and EKG which was fine. I never got a clear answer as to 'why', and the drops / blueness happened only for a short period of time. While I am glad they didn't find anything specific, the inconclusive findings still haunt me. For now, I too attribute it to being an autoimmune and/or PBC related symptom. Thanks for your input MollyMoo.

  • I have two friends with PBC who have similar symptons they have another condition called postural tachycardia syndrome (POTS) Check it out on the web and if you think it might be what you have see if you can be tested for it. Both friends have fainting fits and just go down, problems with irregular heart rate and numerous other problems

  • I recently had a brain MRI and EEG to look for irregularities. The EEG showed nothing unusual and the MRI showed many white matter spots reflecting migraine varients. My neurologist commented that my Pituitary Gland Sella is empty (interpretation: flattened /shrunken/damaged pituitary gland). He went on to explain that about 5% of his patients show this trait in MRIs and it is possible that my endocrine system is affected. I haven't reached out to an Endocrinologist as of yet, as I fear complicating matters and inducing more (needless?) worry. I wonder if anyone here has experienced the same finding and if so, what impact it has had on your condition. Meanwhile, my doctor bumped up my 6 month visits to a 3 month span to keep an eye on any additional falls / changes to my health.

  • i have jenner i just fell sideways today dident half go with a bang

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