Physical Therapy for Balance

[HopetoB12better]

I went to physical therapy yesterday and my balance and strength aren’t where I should be based on my age and height/weight! She did 4 balance tests and I’m below what an average person should be! So, she explained that the messages aren’t getting from my brain to my muscles fast enough (incredible that this can be measured!!) So she gave me 4 sets of exercises to do - toe to toe, stepping up and down and taping my foot on a water bottle and 2 sit/stand ones. I can’t believe how much the b12 deficiency affects this!!!

[Nackapan]

I do. As started with virtigo!

I paid for pysio yk get walking.

Cawthorne exercises given. I went 2 or 3 times and did the exercises at home. I was also told a vestibular disturbance.

[HopetoB12better in reply to Nackapan]

Did u have success getting your balance back?

[Nackapan in reply to HopetoB12better]

I can walk in a straight line now. I do get episodes of it and can feel nauseous and holding onto the walls. Far less often now. I wear single vision glasses for walking. Do use varififocals but have had the reading bit lowered so have tk find it.

I csnt change direction too quickly ie in the kitchen. I try and squat rather thdn bend. (Think of how a toddler moves)

I can get teslly off balance if due a b12 injection . This time didny though but girls si weak and fatigued and achey awful. As I've had antibiotics and a tooth falling apart nothing very clear at present. My bdlsnr took a few months to rectify at the beginning to be able to walk okay ad initially I was bedbound.

Never before has that happened. I'm naturally a restless person and when able to watch tv rarely got tk the end of a film .

[Cherylclaire Forum Support in reply to Nackapan]

I remember having to move my head really slowly in the kitchen when preparing meals - and the supermarket especially a nightmare. Very dizzy and made me so tired.

Also didn't like things moving that I wasn't expecting: buses pulling away slowly in peripheral view, clothing rails moving when touched because attached to ceiling not resting on floor, springy floors, etc. That also made me dizzy.

All of this was everyday problem - now rare !

Takes so long to improve that you almost don't notice it. Or you forget (now that is still a problem ).

[HopetoB12better in reply to Cherylclaire]

Do you recall how long until you felt better about your balance? It’s early for me - I’ve had 7 b12 injections and it’s been 3 days since the last. I actually feel like I notice being a little bit more steady - could be my imagination but I used to walk into corner walls while going from room to room and I feel a bit more controlled and haven’t done it lately. Gosh this is awful.

[Nackapan in reply to Cherylclaire]

Yes some things have I.proved.

Kitchen still a problem as I tend to go I to automatic mode. I then slow down but it takes too lo g then and I cant stand!!

Still cant walk along a busy road for long.

Banging a problem so try and move like a toddler

On weary days difficult to get up from squatting lol

Pattern glare awful. Have given alot of my clothes way. Liked bright colours strips and busy patterns. Sad day. When we could have visitors I had to ask for no busy clothes. O e of my daughter turned up in leopard skin print. She had to change.

Lights i food shops mostly dont send me walking g sideways now. I have learnt to look at the floor . In a big hat tinted glasses and a mask I k ow I look bizarre. I saw a woman I wad at school with . She almost ran away until i used her name and she recognised my voice

I had 3 hours yesterday i had a glimpse of feeling me.

Hurrah . Thanks for saying not to give up on your old self.

Then my tooth fell apart ☹

I also csnt talk to someone e at my side. I co finally have to ask my husband to stand in front of me. I think you aksi learn to accommodate.

When in the same food shop I've learnt not to look up as the lights are bright. And just reach up. They then move stuff.

Thanks for reassurance things can Improve.

My 6-7 day i jection regime has brought on several different aches but may e tooth/antibiotics. As having to wait a month to be seen I was doing with the tooth being infected underneath

Last Injecton got rid of severe weak ness by following day . Never had such a clear response

Hoping you are feeling well and found a subject to paint or person from NHS

T C

[Cherylclaire Forum Support in reply to Nackapan]

I also remember having tooth/gum problems. Can't say that's gone, because I've got a wiggly one that's driving me a bit nuts.

Did happen a couple of times before and infection after removal then reaction to antibiotics. "Vulnerable to infection" and "poor healing ability" ? Yes, both on the list.

Really glad to hear that you are starting to see glimpses of self. Keeps hope alive, doesn't it ? There is plenty more to be had.

Strange you should say that about the portrait: just finished yesterday !

Care to guess the subject's profession, Nackapan ?

Correct ! She's a dentist !

[Nackapan in reply to Cherylclaire]

Oh ! Your friend . Just in a bad mood the other day as my work in the NHS was always prevention!

I know what the NHS is under. I worked in it for 36 years . In a hospital setting on Maternity and in the community

I've put alot in but as many of us not getting alot of help or directing. I push hard bit then doubt as I dint really want to take the lead!!

I went to the dentist in March so just bad luck or as you say 'on the list'

I've rarely needed antibiotics and theve always made me ill.

Teeth or abscesses. Last needed 2004 .

Never had root canal work before . I was prepared to have it out.

Thank you for sharing balance problems . As you say gradual Improvements hard to spot.body aches definitely worse. ??

Hope you pleased with your finished portrait. ! Lucky dentist .

[Cherylclaire Forum Support in reply to Nackapan]

No, not a friend, actually a complete stranger - I've never met her before. I asked for someone who would like a portrait who was NHS frontline and had B12 deficiency - and she was the first one to respond ! Quite exciting. Never really feel like I'm done, so may just give myself some mulling time, limited to this weekend, before sending it off.

I always thought of myself as very healthy before this - how about you ?

[HopetoB12better in reply to Nackapan]

After my 7 loading doses I do feel improvement in my balance and fatigue. I am thankful!! Although my leg pain and foot pain has increased a tiny bit, I am hoping it is just the nerves awakening from being suffocated for so long.

[HopetoB12better]

Oh and when I used to walk the neighborhood, my feet felt “floppy” like I didn’t have control of them - they would sometimes smack down or I would trip, and I felt like I was slowly going bow-legged. That part may have been just a sensation but it was real!

[Cherylclaire Forum Support in reply to HopetoB12better]

Yes to the floppy feet tripping- like you've got clown-shoes on !

Then would get cuts and scrapes on numb legs (outer part of shins)

that then took an age to heal up.

No to the walking into walls.

Did get clumsy: broke a lot of things when washing up. If you don't get that, feel free to use it as an excuse !

I would say with me, nothing really goes completely. Some frequent symptoms have become really rare, like the dizziness, but I am aware that if I overdo it or try to reduce injections, they will creep back in. Never know what ones to look out for though.

I am able to do more lately so I have been making raised vegetable beds. I noticed then that the floppy feet and tripping, the cuts and numbness came back. Recognised the cause: lot of physical work, long days = too much B12 used up too quickly. Could as easily have been a return of fatigue or dizziness.

But this is just me and you will find some commonality with people here, some differences. We are unique in symptoms: severity and frequency and response to treatment, and frequency required to best control symptoms.

What I did was look for people who are most like me by reading a lot of posts and replies. Unfortunately for me, I seem to be one of those people who do not end up with either a clear-cut PA diagnosis or reliable improvements. I used to get so disheartened when people said that you can judge the correct frequency for self injections by guaging when symptoms return- because mine never went ! For me, frequent injections help but they are not a cure - they just make my condition manageable (usually!)

Yes it is awful- but mainly because of all the wasted time that the medical profession spend looking to make this turn out to be something else, rather than believing that all these devastating symptoms are caused by a simple vitamin deficiency. Surely they have seen this enough times by now, in all it's varied forms.

In the meantime, while waiting for them to catch up with us, I would take this one day at a time, and keep a symptoms record.

Choose your top ten symptoms: worst/ most frequent/ ones you most dislike/ ANY NEUROLOGICAL SYMPTOMS/ some visible ones (take photos if cyclical) and make a chart with these listed one way, dates the other way, so that a simple dot can show when symptoms occur in a day, or as some people do, give them a severity rating out of ten.

Show on this when you had your injection. You should end up with an idea of when you see any deterioration or improvements, how that relates to injections, if any patterns emerge.

You can show this to any GP/ consultant you like: some will see this as obsessive, but what other choice do we have ? Some, the real stars, will thank you for helping them to see what is going on with you - way more useful than a 10-minute observation of a stranger ( for those who look up from their computer screen).

Get a kind GP who knows that you are not an attention-seeker, and don't expect to find one who is a B12 deficiency expert. All of them can read . Stay with this one.

NEUROLOGICAL SYMPTOMS: you should be referred to a neurologist: there will be quite a wait. Those with neurological symptoms should be given loading dose injections every other day until no more improvement can be had and then an injection every 2 months. Nerve damage can take a long time to even start to improve and if left, can worsen or become irreversible. I didn't feel any of the injections at all for the first 10 months - after 3 months of reloading at 2 injections a week. For the first 31 B12 injections, I had to ask the nurses if they had been done yet because I couldn't tell.

[HopetoB12better in reply to Cherylclaire]

Clown shoes - ha ha ha! Yes! Exactly. Thanks for the chart idea. I used to write symptoms down but then I thought - what for? But now that I am on this site, I am more motivated to track things. I’ve had the 7 loading doses in a row - now I am scheduled once a week for a month then once a month for 6 months with bloodwork at 3 and 6 months. The leg pain (nerve and muscle) seems worse but the brain fog seems to have improved. I feel a little more alert when working. Also, I have a Neuro - I was tested for MS and hand nerve and muscle conduction tests because my symptoms were so severe. Thankfully they were normal. I guess it is one day at a time in this new life of mine. At times I get really frustrated but I keep telling myself it could be worse..... 🤗

[Nackapan in reply to HopetoB12better]

I think in hindsight(a wonderful thing) I went from 2 weekly o jections to weekly to 2 weekly too quickly.

I'm 20 months in now and S doing sc which I dont find a problem with have actually started to do more I je tions .

Like Cherylclaire I've never been symptom free injections just make everything less severe .

Si I've still not worked out a frequency. It's much better now I can do it myself with second guessing and booking g it

Gp would not let me go back to more than 2 weekly.

I saw it ad an achievement the longer I could go. But that is rubbish . The achievement is feeling better. I think repeatngl been told I should not be needing so much b12 . Told I need antidepressants. Told I need to get a job!@ told I'm not pacing enough. Told I must need more motivation.

Since lock down I've realised all this from the chosen doctor of 6 was affecting me greatly. Even the neurologist didnt di any tests and two have discharged me. !!

It's a horrid thing not being believed

Even a dear friend of over 30 years recently retired doctor. He says things like arnt yiy off thises injections yet. Ect ect .

Never came across it so severe ect

Wh am I not trying every drug prescribed. That would be 12now!

Coukdnr believe reaction to amitriptyline. Well i didnt need it . It aggravated my symptoms .

Then the Go when ladt seen said I'm not getting better as wont take drugs so back to my fault.

But why would you mask the very symptoms they dont understand .

If reasons given and they understood how the drug would help. Yes ofcourse I would take it.

Clown shoes a good description. I also say stagger walk. Walking on sponges. Banging arms I to doorframes

Thinking g about it perhaps the doctor noticed all my bruises and that why she went down the domestic violence route . That really threw me

As did the yoga and getting a job

I think you've the right attitude and doing really well. May many improvements happen for you. TC

[SaywhatIsee in reply to Cherylclaire]

Hi, confused me even more now. I really dont know exactly what I have got, but I know that it is Neuropathy. My doctor refused to acknowledge me in the beginning, a year later said she would make me an appointment, and weeks later, said that she changed her mind and did not bother. I waited for a locum, who done more in 6 mins than she done in 6 years. My point to your write up, is that I saw a specialist, who very quickly pushed me through, including a electrical test, then sent me to a very specialist. All she done was a walking test, a toe bend, pin prick, and a hammer test. My advice then was to increase the dosage from 2 to 3 tablets per session. She also missed an important part of the blood test, to see if DB2 involved, when I wrote back, she responded with " oh, your doctor can do that ". I have since been told, that Gaberpentin is only a pain killer, and a controlled drug, but for me does not have that much effect. I have the numb toes, the burning has now gone from the feet up to the knees, I have balance probs of walking diagonally sometimes, and when I turn my head to when crossing the road. Lastly, affects more when in the dark, have fallen a couple of times thankfully in the bedroom. However, have never had the words B12 mentioned at any level ???

[Cherylclaire Forum Support in reply to SaywhatIsee]

Perhaps you should ask them to rule it out ?

Worth a try.

[HopetoB12better in reply to SaywhatIsee]

It’s shocking how much this diagnosis is missed!!! I was having many of the symptoms you describe - Pins and needles in my hands and feet, couldn’t walk a straight line, burning pain in my feet and arms, extreme fatigue etc.My regular doc brushed me off several times - i went to a Neuro who said my b12 was “low normal” but with my symptoms she ran a methylmalonic acid test and it came back sky high and therefore the b12d was diagnosed. From there I had injections, nerve Tears and now physical therapy to get my balance backs Regular doctor brush you off so often - it’s a flipping crime!!!!!!!!!

[Bonjourtristesse]

I started having problems with the two fingers on my right hand about 5 years ago. I was told it was a trapped nerve and was referred to physio. About 3 years ago, I dropped something heavy on my foot and cut my toe and when it healed the toe was numb. I've had numerous episodes of what I was told was labyrinthitis and dizziness upon standing or lying down. After I started b12 injections I thought I'd done something terribly wrong as I started getting mad pins and needles. They eventually went after several injections. Yesterday I noticed that things started feeling 'fizzy' when I touched them like a mild electric shock and that my right hand, arm and leg didn't feel as 'obvious' as the left one. That's only been in the last 2 days though. The first 5 days after injection my arms and legs felt fine.