Weak legs and dizziness

[brenanddave]

Hi I am writing again as my symptoms have changed a bit more and and I'm feeling very concerned. I have obviously done too much and had a crash and ended up in bed or couch since last Wed when I had to do grocery shopping and found my legs weren't working right I felt like I was moon walking and legs were heavy and ached. I stupidly continued and done my shopping in this state but was very worrying. Anyway! I got home and rested for 2 day but had to travel quite far away not driving but had a full couple of days as we are packing my father's house up to sell and we had a couple of trips to the new retirement home. I could barely walk and was, and still am very dizzy blurred vision I couldn"t read anything, Has anyone else had this happen? Its like vertigo! So no balance a. I'm so worried that this is getting worse I talked to my doctor this morning and he has said he knows only what I am teaching him from this group and med research I find. I asked that he re-do all my nerve tests so he can meet the high requirements needed to get an early appointment with a neurologist for MRI and other tests and he will do that for me. What else should I ask or tell him, please? Any other tests he should be doing? He said he is very keen to learn more to help me, and then others in the future. He said hes with me for the long haul with this lol. Thank god! Thanks, guys, Sorry to have another rant lol but I'm scared I might end up in a wheelchair or walker as I have read others have here, x

[Nackapan]

Yes I've had all of what you describe and more.I had vertigo and was befboind I ituslly apart from getting out of bed into s taxi and staggering into the doctors surgery for a b12 Injection.

I had vestibular physiotherapy to help my balance issues and to get walking.

Had the epley manoeuvre as well.

Look up Cawthorne exercises.

Do them gently .

Retrain your brain .

I still can't totally believe what mh brains telling me 5 yesrs on .

I think I'm going to fall so lean forward and the stagger starts .

So have to sit realign and stay upright

.

The blurry vision and leaden legs are now a sign I'm due my b12 injection 💉 but usually only now if ive done more .

Stress, anything physical needs constant 'time out ' pausing breaks.

All very frustrating but it dies get better.

Pushing through avoided at all costs .

Supermarkets are a real challenge.

Noise ,visual stimulation ,maths, pushing a trolley that never go straight .

I'm trying to do smaller shops ,online shops and that is the main activity for the day .

Long gone are the days I used to do that on the way home from paid work !!!

Ask the neurologist to look at you Brain mri for any changes to affect balance.

Some changes were seen on mine.

I paid for one load of vestibular physiotherapy to get walking but then had to stop as caused migraines.

2 yesrs later got z course of 6 weeks when I coukd do so much more .

Yesterday I was leaden .

Locked eye sockets . Head pressure.

My brain saying kerp still .

I did however go for a walk alone and just sit and pause .

So jot so much pushing through bit ignoring some brain messages .

All totally exhausting.

Yesterday did feel better though.

Due a IM B12 tomorrow.

I can't remember how far in you are or on what frequency of b12 .?

Don't get scared just slow down and that horrible word pace . ( never was in my vocabluary)

Drink lots of water and eat small meals on time .

T c

[brenanddave in reply to Nackapan]

OMG! You have really been through so much.I am so sorry to hear about that. It's unbelievable after having a relatively normal life to now have to accept the sometimes huge challenges and restrictions to our lives. I was diagnosed about 6 mths ago and SI for about 4 mths. 2x a day at the moment.I am so grateful to you all for your openness and kindness sharing your experiences and guidance. Thank you x I will slow down and pace myself. Thank you

[Nackapan in reply to brenanddave]

Yes early days . Your body needs a chance to heal .Yes 'only' condition to date diagnosed.

Nothing else before.

Onto other meds.

So nothing to cloud the waters

Menopause definitely my trigger .

So s late diagnosis as everything pug down to that .

I knew more going on. !

Gps didn't listen or test .

First ever b12 serum test at the age of 57 .

This has to change.

Hopefully the new NICE guidelines will help.

Just keep going and a slower rate !!

[brenanddave in reply to Nackapan]

Thanks Nackpan! I was the same. I felt for years something was wrong but didn't know what. Memory problems, tiredness depression etc. I have stayed in bed last twoo days and feeling a little better but still wiped out. I had to go to the doctors today who reiterated what you all have said that I have been overdoing things. I picked up a few groceries but now don't have the energy to put them away so I'm not. My husband can do that. My feet are up probably for another 2 days now aaahhh!!

[Wheat]

hello, im so sorry you are so unwell, hope you feel much better soon. About new tests I do not know. To me it sounds similar but not identical reaction to overdoing it. Forgive my brain, I think you are s.i., is your folate level, and other bloods ok.

[brenanddave in reply to Wheat]

Aww! Thank you wheat x Yes! SI for 4 mths. 2 x a day at present.

[Wheat]

4 months x2pd too x😺

[brenanddave in reply to Wheat]

Well!! I will be keeping an eye out for your posts to see how our progress compares. Feel better soon x

[Narwhal10]

Hi brenanddave,

I am so very sorry to read how poorly you are. Thank goodness you have a supportive GP who has referred you to a neurologist who will do tests.

It could be, the body whispers and then it screams which I have done. One has to because of caring responsibilities, moving home, going to an important celebration or a work or study deadline. You are packing your father’s home and moving him. 🥲🥲

It is wiser not to attach emotion such as feeling guilty or angry is futile because we know that we have done too much. It is a case of oops, next time, I will plan better. I get my groceries delivered so I have the energy to go swimming. I barely do any housework because I would rather have a conversation with someone.

At the moment, I have worn the same clothing 4 days in a row because I am busy. I pop into a local shop, the shop assistant tells me that she doesn’t judge. Then we laugh and joke. I walk to the shop. Like several of this community, I do not take the ability to sit, stand and walk for granted.

One approach that may be of benefit is to get up every day and think I only have £10.00 worth of energy, I must spend it wisely. If I go into debt then I might have the bailiffs at my door. Pacing is vital in Energy Limiting Chronic Illnesses.

chronicillnessinclusion.org.uk

Rest up, watch some lovely easy to follow films. Let us know how you are getting on and neurologist stuff. 😘😘

[thyr01d in reply to Narwhal10]

That's such a great analagy Narwhal, get up every day and think I only have £10.00 worth of energy, I must spend it wisely. If I go into debt then I might have the bailiffs at my door. Pacing is vital in Energy Limiting Chronic Illnesses, thank-you.

[Permexpi]

I have not been grocery shopping in years, I get everything delivered now and save energy for those things I can't avoid doing. I am so glad I can do this and keep my independence. There is no way on earth I could get to a shop, carry bags etc. I know its hard staying within your physical limits but I eventually realised I was only making myself worse by pushing myself to do too much. I would get vertigo, palpitations etc which I have not had since I stopped over-doing it!

[charks]

Don't worry. Yes, you are overdoing it. I take oral B12 and find that I need to 'top up' before doing anything strenuous. If I don't I get 'heavy legs' etc.

Re neurologist. Most us on the forum have had very disappointing consultations. Most of them know nothing about B12D and end up telling people they have MS or FND. And they react very badly being told by anyone (GP or patient) what tests they should carry out.

[Kittykat50]

About My B12.I was stupid not to go get mine in 7 months.

Thinking ahh I'll be fine.

Honestly I've been so poorly after even having it.

So weak. Couldn't go out its been 2 weeks I'm now picking up.

My nurse done more blood test My B12 was so low I had a 3 boosters.

I'm just so glad I got up went as I'd never been so ill with loss of apatite even so low in mood hair going thin. Was just horrible.

Please keep up with your jab its so important. It was that bad I was cancelling my holiday today for next week but each day is getting better.

In doors alone 11 days.

Please peeps keep up on it.

Kitty x

C

[Technoid in reply to Kittykat50]

B12 is a non-optional requirement for human life. Never postpone taking B12 injections if you have PA and do not respond to oral supplements. If you leave it too long it is possible to incur damage which is not easily corrected. There is no reason to take chances with this. 7 months is way too long to wait between injections. I strongly advise you to reconsider your injection frequency.

[Hockey_player]

Be careful. It sounds like my mom when she had a brain aneurysm.