imbalance walking: I feel imbalance while walking... - LUPUS UK

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imbalance walking

neha9 profile image
12 Replies

I feel imbalance while walking.. i cnt even walk 3 steps without any support! i went to docter n he said it was vitamin n calcium deficiency.. he gave me some tablets for 3 months course but i see no change in my walking. in my childhood i never had such a problem... but now i m fedup of this problem.. many people even call me a polio patient.. but i knw itz not polio. how to solve this?

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neha9
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MaryF profile image
MaryF

Has your GP tested you for Hughes Syndrome/APS? that causes terrible balance problems if not picked up. MaryF

neha9 profile image
neha9 in reply toMaryF

Hie maryf actually m sorry bt i dnt knw anythng abt GP tested you for Hughes Syndrome.. so cn u explain it 2 me plz????

MaryF profile image
MaryF in reply toneha9

Some people with Lupus also have Hughes Syndrome/Antiphopholipid Syndrome, also known as 'sticky blood' lots of problems with migraine and balance, but easily sorted if picked up. The blood tests are simple. Where are you located? MaryF

neha9 profile image
neha9 in reply toMaryF

india

MaryF profile image
MaryF

I will provide some links, do take a look and see if you can make a telephone call: neurologyindia.com/article....

japi.org/march_2010/Article...

Good luck. MaryF

neha9 profile image
neha9 in reply toMaryF

thnk u soo much!

ShannonB profile image
ShannonB

Is Hughes Syndrome picked up with regular lupus bloods or do they need to be looking for it specifically?

EOLHPC profile image
EOLHPC

Feeling for you. I've been managing my version of this sort of balance thing for decades, and know it's part of my version of SLE, and it does respond to my SLE treatment plan, but lifestyle management is equally important. For instance, we now know that SLE caused tendon tightening in my lower legs & feet is part of my version of imbalance problems...and this element in my balance problems is responding well to physio & medication. I'm now 60.

It seems to me that balance problems seem to be a big issue for many of us. Since this forum began, there have been several very good questions on this subject posed here, with very very good replies, testimonials & advice in response. So, if you haven't already, and if you feel well enough, I urge you to use this forum's search facility, via inserting key words such as: vertigo. Dizziness etc

Your balance probs may well be less complex than mine, but, for what it's worth, here is some of my tale:

My feeling is that there are several causes of our balance problems. Mine were originally thoroughly investigated at length by NHS ENT drs in the '80s. This was decades before my version of lupus was diagnosed & treated (my SLE treatment began going on 4 years ago) as benign non positional paroxysmal vertigo exacerbated by arthritis in my cervical spine. After several months, treatment had to be stopped due to the addictive nature of oral motion sickness medication. I then concentrated on REST, trying not to worry and homeopathy. I was off work for months, and continued to get balance/vertigo symptoms whenever my SLE related symptoms flared. This was all very distressing, but I learned to take it in my stride...haha....because I had to cope well enough to earn my living & pull my weight at home. It was very hard, but somehow I managed. Anxiety, I found, didn't help me reduce these troubling & highly inconvenient symptoms. In the '90s my balance probs etc made the the nhs test me for MS, with negative results. Again I was left to manage as best I could.

Now my SLE treatment plan is helping greatly to reduce my balance & vertigo probs, especially the 1000mg mycophenolate I take daily. But I think my lifestyle management is also key. For instance I do 40min of physio for my leg & feet tendons daily which helps enormously with my balance. Recently I've come to understand that my version of balance & vertigo probs is very likely partly due to synovitis in the top cervical joint. And yesterday I read online that there is respectable research indicating that high dose vit D can help with benign positional paroxysmal vertigo....I've been on daily high dose vit D for 10 years now...so maybe that's helping me too...

So, I wish you all the best, and I recommend you urge your drs to help you understand more thoroughly just what is causing your version of balance problems...the cause maybe simple...I hope so

Take care, please let us know how you get on

misty14 profile image
misty14

Hi Neha

Balance problems with walking can be due to nerve problems and or Vit B deficiency. Worth getting that tested. I have balance problem but not as badly as you. Hope it improves soon.X

I also have a mild balance problem and I don't have Lupus but do have RA and Hypothyroidism with co-morbidities that might be contributing to my own balance issues. The way I address this mix is by checking my Vitamin D levels and taking sublingual B12 supplements daily. It is impossible to overdose on B12 as any excess flushes out naturally. I find the balance issues are worse when I flare or when my eyes are particularly dry and affect my vision a little. I hope you find the cause and can treat it soon as yours sounds quite serious to me.

onamission profile image
onamission

I have this balance problem and so did my late Mum I don't have Lupus but many symptoms both Mum and I have COPD

neha9 profile image
neha9

i consulted my problm to a neuro-physician... and he said MRI brain scan is requiered.. so cn anyone tel me what is d average cost of brain MRI in mumbai, India?

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