Anyone here have issues with 'falling down'... - PBC Foundation

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

JennerLayne profile image
12 Replies

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.

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JennerLayne
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NotorDJP profile image
NotorDJP

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

HeidiLucy profile image
HeidiLucy

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.

Heidi

irenestamelos profile image
irenestamelos in reply to HeidiLucy

Same here i dont if my leg gave way but mine felt like a strong hard push right down my freinds house i hope they did not see anything. droppping things no falling.

irenestamelos profile image
irenestamelos in reply to HeidiLucy

Goodluck to everyone its a horrible thing to go through you dont when the netx fall will happen im staying for for a while no more walks.

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.

MollyMoo profile image
MollyMoo

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!

JennerLayne profile image
JennerLayne in reply to MollyMoo

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.

Axl888 profile image
Axl888

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

JennerLayne profile image
JennerLayne

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.

wigancasino profile image
wigancasino

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

irenestamelos profile image
irenestamelos

Ok today started my normal day schedule i was on zoom working then i said to myslef it was such a nice day out let me go out for walk which i normally due half of the time ok here how iit went i was walking fine then all of a sudden i felt a strong force like it pushe me down there no one behind me i was able luckly enough to get up and back home again then when i was walking down on nome ave i saw the un i saw this car it was grey van just like looking at me at my direction and guess what when i walked down i saw nice smile on her face maybe shewas thinking you desrved it anyonway its just a scrape not to bad i just fell in front of my freinds house i hope they did not see anything im still asking how did i fall this just happned today i dont think im going to be outside i did not know this was going to happen to me today i go through walks everday just today it happned it was a very hard push i felt but there no one behind me falling without even tripping on anything i saw the sidewalk was staright i walk down there all the time maybe the lady that was parked down the block was place hexeses on me faling without a reason.

hypnovoice profile image
hypnovoice

I have experienced a similar issue of falling and feeling as if my leg just wasn't there. My doctors attributed this to a back issue and after conservative treatment this was resolved.

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