nerve damage

[cantstopit]

how to know for sure my legs are weak and I cant walk much at all due to b12 or not? started treatment 8 months ago, was very severe and couldn't Stand for more than few minutes. now can move about but still cut walk

[Nackapan]

So you've made some improvements. Are you getting enough b12 ?

I was bedbound initially more from vertigo then balance and weakness problems

I am over 2 years in. I can walk now but not for long 9 mins to be precise. Can go a bit further if I sit for a while . Any hills I struggle.

I also have problems standing on the spot . A problem with cooking.

Some days are better than others

I do notice now I'm extra weak the day after I've done more cleaning or something I'm in bed early but not asleep.

So yes a resl possibility if other things ruled out.

Make sure you are getting enough b12 . I'm sure you will improve.

[cantstopit in reply to Nackapan]

thanks, well it's been almost year of shots, started July last year. take one every second day, was on one each day before, maybe will try again. im sorry to hear about u. is there any test to see if I do have lasting permanent damage? I just cant stand or walk for more than a few mins, sometimes a minute. my arms are weak too. neuropathic pain went away but weakness makes me unable to do much at all....is there anything else that can be causing this? I was bed bound too. just wanna know if ill be able too recover fully or stuck with this for life..,

[Nackapan in reply to cantstopit]

I dont know.Have you seen specialists?

Have you had mri scans?

I know difficult ti access ar present

Try getting more tests done.

I think where theres change theres hope. .Yet some sitting pysio simple exercises to stop muscles wasting.

I even do eye ones .

I was given a simple sheet to do.

At the start I used ti sit on a chair and stand and sit a few times and build on it.

All small things can help.

The same with your arms

Try and get some help with this .

T c

[Penni]

I know exactly how you feel, back in 2014 I spent 5 weeks in hospiltal due to not having a b12 injection for 3 years. I was unable to walk without help, stand at all and was sleeping in my dinning room. Now it's almost 7 years on, I still have problems walking and standing, so have a bar stool in my kitchen. The lack of b12 has caused nerve damage in both my hands, feet and lower legs. I gave up driving as I decided that it was safer as I have almost no feeling in my feet.

Having changed GP's I now get my b12 ampoules on prescription and SI as and when I need them (usually every 8 weeks). All the nurses are very supportive about me SI and have thanked me for saving an appointment for another person.

If I over do things one day, it catches up to me very quickly and I do need a lot more sleep/rest than I used too. If I have groups that I attend on a Monday and Tuesday then I need Wednesday at home.

Make sure that you give yourself time, when I was first diagnosed with PA it took a year to start feeling better. Finding this site and the Pernicious Anemia society has been a great support.

[cantstopit in reply to Penni]

sorry to hear! are u able to walk n stand tho for some time? what test can I do to see if damage is permanent? I reached a plateau where I can stand for a minute but its hard and my legs are sooooo weak, shots every two days doesn't help so I want to know if theres hope or just know its permanent

[Penni in reply to cantstopit]

I can walk for short periods of time, flat surfaces are easier but use a crutch when out. Standing is ok, but gets painful after a few minuets due to damage in my spine. Stress makes it worse and if I've done a lot of walking in one day, my feet will swell up and I'll know it the following day. I'm tons better than I was and have reached the point where there isn't any improvement. As I live on my own I now have a bath chair that helps me to get into and out of my bath safely.

I now don't use sharp knives as I cannot feel parts of my hands, so buy veg ready prepared and frozen. Works out safer, cheaper and less waste. Everyone has things that work for them

[Sandxx]

I feel you! I am 26 and was left for 4 years without treatment, even then I was told the wrong thing. Same as the others, bed bound, could barely do anything, trying to work, go to uni and anything else was a struggle. I believe it has left some damage.

I am now in a place 3 years on that I have regular treatment (2-3 weeks before is harder) and know what my body is like. I can walk but does sometimes cause dizziness and weakness, I am done for a few days! Stay intune and it will get better 🙂

[Brokenbutbeautiful]

I was wheelchair bound by the time I was diagnosed. I was in a rehab wheelchair, because I couldn’t sit up long on my own, so I had to be tilted back. It took 2 years before I could walk. I was using a walker and doing well until last year. Right at the beginning of covid, I got really sick from something that wasn’t covid and almost died. I had to start over. Don’t be hard on yourself if you don’t progress as fast as you’d like. You’ll get there. Some people need to inject every other day for a few months before they see a marked improvement. Best wishes!!

[Sleepybunny]

Hi,

"what test can I do to see if damage is permanent?"

B12 deficiency can lead to problems with spinal cord.

Have you seen a neurologist and asked to be assessed for SACD, sub acute combined degeneration of the spinal cord?

I'm not saying you have this (I'm not medically trained) just that your doctors should be aware of this possibility in people with b12 deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Have you got test results for folate and ferritin (or other iron tests)?

Quite a few on here find they are Vitamin D deficient as well.

Have you been checked for thyroid issues as some forum members on here find they also have thyroid issues?

In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests they can do.

Thyroid tests

thyroiduk.org/getting-a-dia...

May be worth putting any thyroid results on Thyroid UK forum on HU.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

B12d.org (UK charity)

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Next link lists some support organisations in other countries.

b12deficiency.info/very-use...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

There is also a paediatric version of above book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Films about B12 deficiency

b12deficiency.info/films/

I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, B12 books, B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.

I'm in UK, so some links I post will have info that is specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[HealingRose]

Have you had other nutrient levels checked? What do you take for supplements? Since being diagnosed with PA, I learned I had a host of nutrient deficiencies alongside B12 due to severe GI malabsorption. I also have beriberi disease, which is caused by a deficiency in B1 (thiamine). Beriberi causes nerve damage and can also lead to neuropathy and paralysis. Many of the symptoms are similar to B12 deficiency.

When we are deficient in one, we are often deficient in more. I responded well initially to B12 injections, but some of my symptoms did not resolve, and I suspected there was something being missed. I continued to experience peripheral neuropathy, weakness, and a host of other symptoms. For me, B1, B2, B3, B6, B7, and B9 were also deficient. If a person is B1 or B2 deficient, B3, B6, B9, B12, and iron will also not be properly absorbed or assimilated. I strongly suggest you ask for a test called TDP with liquid chromatography (also called whole blood thiamine) and Riboflavin with liquid chromatography (also called whole blood riboflavin) to assess how the body is using B1 and B2. These are superior to standard blood level labs. Plasma levels of nutrients can be normal, but one can still have a functional deficiency.

Another excellent lab that is more commonly ordered by a functional medicine doctor or naturopath is called NutrEval by Genova Labs. This looks at many different nutrient levels in the body and can provide good information about what needs to be supplemented.

If you can't get any of these labs completed, trialing thiamine is safe, and if you respond well over the course of time with a lessening of your symptoms, it's likely indicative of a deficiency. It's important with thiamine to start with a low dose and move up gradually and to also take equal amounts of B2 along with magnesium, as these nutrients work closely together in many processes in the body. Some great resources for learning more about thiamine deficiency and treatment are Elliot Overton YouTube videos, the work of Dr. Derrick Lonsdale, Dr. Chandler Marrs, and Dr. Constantini. I wish you the best in finding answers and healing.

[fbirder in reply to HealingRose]

If you're going for either of those tests then I would insist on High Performance Liquid Chromatography/Mass Spectrometry. Infinitely better than liquid chromatography.

[Hidden]

I see Sleepybunny has put some sage advice, as usual.

Long ago I had problems with walking needing a stick to stop me falling. My right thumb kept twitching so pens went flying. I lost my grip so couldn’t play golf with the club going further than the ball. I didn’t dare use hammers. Tired and exhausted I was in real trouble.

After many false starts and dead ends my doctor spotted the small bone spurs in my neck as the bag of pebbles sounds when my head turns. Anti-inflammatory drugs, short session traction and physiotherapist didn’t exactly cure it but made life possible. PA has added another layer of problems now.

It is all too easy to put these problems down to B12 when there can be many reasons for the same symptoms.

My experience is to keep trying until you get to the root of the problem. There will be some specialist who recognises your particular condition. It is a matter of finding them. Best of luck.