I’m fairly sure my legs are getting worse, I can hardly lift my feet off the ground & feel so stupid! Will it help if I try to walk more. At the moment I’m injecting every other day,would it be okay to inject every day? I’m hoping to put off going back to my GP, I’m bound to get told off for doing my own jabs!
Shuffling gait: I’m fairly sure my legs... - Pernicious Anaemi...
Shuffling gait
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19 Replies
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A pysio might help you build up
muscle strength.
It is early days for you.
Get tour bloods done . Thyroid ferritin folate ro make sure you dont need any supplements or anything else going on.
If neurological symptoms get a referral to a neurologist.
Dont be put off seeing your doctor.
Exercises- gentle range of motion, walking, swimming- are essential to restoring nerves that have been damaged.
Are you taking folic acid and a daily multivitamin to support the B11?
• in reply topvanderaa
Yes, I’m taking folic acid & multivits. Thanks for the advice x
I would try increase exercise, slowly . Muscles waste so fast if not used. Instead walking you could try other type of exercise first. Walking requires quite a lot from certain muscles . Like this morning I felt my right leg was weak and stiff and I was wondering what the ****. But as I started to stretch I felt it's my pelvis that is very stiff and piriformis irritated. Five minutes and leg is back.
The problem might lie in any muscle and especially weak pelvis causes so many troubles. Stretching can be done while laying down, certain strengthening exercise while laying down or sitting up.
And if you have been poorly for long your brain might automatically assume you are still unwell. Had long chat about this with my neurologist and he confirmed one might have to teach the brain that the illness is passing it's on to use this part of your body again.
• in reply toJustiina
Thanks very much x
Justiina• in reply to
Physiotherapist could point out if you have muscle wasting or what is going on with physical ability. I don't know how it works there but over here in Finland they do referral to specialists if they pick up something unusual in physical condition. That could give you peace of mind if GP doesn't care.
• in reply toJustiina
My GP referred me to a physio before she had done any blood tests. He just gave me some stretching exercises to do at home & said he didn’t need to see me again. I’m beginning to think a lot of my troubles are down to my depression & laziness. Tomorrow I will start anew. My son has a delightful 6 month puppy & I will start walking her....easy walks at first & I’ll start doing those exercises again! Thanks for replying x
Justiina• in reply to
Ouch, what a bad physio 😒
Naturally depression could affect but I would not put everything down to that. And laziness, oh well you have been ill because of PA.
I have been told I am lazy and that's how I am, can't expect to be physically well if I can't lift my butt up from the bed.
And that's nothing even close to the truth.
Doctors have had very little interest or knowledge to give some hints so I have had to "rehabilitate" myself.
But it requires so much effort to do it on your own, it's disheartening.
I never was bedridden per se but worst times felt too weak to stand or walk much.
Have had to figure out by myself I had awful posture causing huge distress to wrong muscles so have had to learn and find all right muscles to strengthen them. Had to really pay close attention to what muscles do the job and what are not supposed to.
Walking especially need pelvis strengthening as the movement starts from pelvis, if those muscles are bad then you probably end up using front of the thigh which leads to weakness of leg. SI joint can get irritated or inflamed causing whole body going wrong from toes to head. And so on. Tight / weak hip flexor can as well cause trouble with walking as well.
Dog is wonderful friend to walk with. My life changed when I got a pup and had to walk with it. It forced me to move and strengthen myself 😊 Take it slowly one day at the time, don't over do it.
• in reply toJustiina
Thanks Justiina, I have felt greatly encouraged by the replies I’ve on here. My depression was mainly caused by the death of my dog Bobby last February, I just couldn’t bear to go out without him...of course I didn’t know then I had PA, so there must have been muscle wastage during that time. Yes, dogs are wonderful but naughty a 6 months! I follow a few dogs from Finland on Instagram. Thanks again for your encouraging posts, I’m feeling much better now x
This is a very good reply. I still don’t feel strong enough for doggie. I had very delayed diagnosis and kept myself alive with a megadose vitamin formula. I had a minor background in modern dance. I did two things that helped me immensely. One is Pilates. Joseph Pilates rehabilitated WWI soldiers. A main piece of equipment is called The Reformer. It is a moveable bed with springs. I developed strength and articulation in my legs and feet while lying on my back. I also rowed somehow. I have recently bought myself a used rowing machine.
I have been to more than a dozen neurologists with no help. I had to Jack this diagnosis myself. I have suffered a broken hip which is a complication after my diagnosis.
Now the doctors are merely fascinated Will I get stomach cancer. That is the good doctor. The rest conspire to continually alter my records.
I have just embraced a zero carb diet as my blood sugar and insulin are high. I studied the ideas online and just recently traveled across the country to a doctor who has healed himself this way. I hope to keep up with multiple self injections weekly.
See a neurologist to confirm your gait problems are due to b12d. You could have more than one problem.
I went through that when I was out on allergy shots. I literally could not lift my legs to get in or out of the shower or bed. I had to pick up each leg with my hands. I was told it was a reaction (ie. allergic) to the histamines. I stopped the shots and regained the use of my legs and freedom of movement. Going through that led me to study Histamine Intolerance (HIT), which has helped me tremendously. Even without shots, histamines can build up in the body through foods and environment. When pollens are high and my diet is high in histamine foods, I begin to have problems again with heavy or stiff muscles. Doing the HIT diet has taught me how to better control my histamine levels and my reactions, and I haven’t had any problems since. I don’t know if you have allergies, but it may be something worth looking into. Sometimes we have them without realizing it because we are unaware of the symptoms of a reaction.
A shuffling gait is one of the classic signs of nerve damage. It may be caused by a B12 deficiency, it may not. Take Damseltree 's advice and ask for a referral to a neurologist.
It's caused by a loss of reflexes in your lower legs. That's one of the three things your body needs for a proper sense of balance (as well as a working inner ear and working eyesight). Because of the nerve damage you need to look to see where your feet are and you can't stride out as you might do normally. That results in a hunched shuffle.
If that is the cause then you'll perform badly on balance tests - like the ones used by US cops to determine if you're drunk (walk heel-to-toe, stand on one leg, etc.). Mine (not caused by B12) is so bad that I have a special "I'm not drunk" card from Ataxia UK.
Are you taking folic acid as it is required for the B12 to work -I take 5 mg daily. My shuffles went within a couple of days with injections every other day.
Taking 5000 mcg of folic acid a day is not only unnecessary, it is potentially dangerous. ncbi.nlm.nih.gov/pmc/articl...
No doubt you have been reading on a dangerous FaceBook page that these megadoses of folic acid are essential. They are wrong. Dangerously wrong.
A doctor might prescribe 5000 mcg tablet of folic acid, for a short period, to rectify a severe deficiency. You should never take more than 1000 mcg a day unless prescribed by a doctor.
Thank you. 5000 mcg = 5000 micrograms = 5 milligrams = 5000 micrograms. Folic acid = vitamin B9. I was told that B12 supplements would not be effective if B9 was not supplemented? I am now quite confused.
I never take advice from FaceBook unless I check it out. I was advised to take this level of supplement by the consultant treating my pernicious anaemia and is prescribed by my GP. I also misread the NHS website. NHS says. Folic acid is generally very safe. Taking too much is unlikely to harm you or your child.
Any advice will be very welcome.
When were you diagnosed and how long have you been on treatment? How old are you? Do you do any stretching?
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