Please help me is that to common to have extreme muscle weakness in whole body?

[Hamayeshguy]

Why my muscles extreme weakness don't get improved. Please help . Is that too common to have extreme muscle weakness. In 2020 September I have experienced megaloblastic aneamia it was just those symptoms with stomach with tormented feeling muscle. And double vision blurry eyesight. I didn't tests for MMA and homocysteine and since I inject cyanocobalamin earlier than tests my MCV was also in range. But for seven months I took sublingual and slow released pills then switched to cyanocobalamin injection and light exercise but my symptoms developed so badly and fast. Then started to take high dose skiw release b22 with active b complex along with cyanocobalamin injection after 7 months btgen switched to hydroxocobalamin injection and first started 2 times a week but now for almost a months inject every other day. But my symptoms developed to my arms with weakness numbness and pain. Then tried everyday injection but couldn't tolerate that and back again to every other day. I don't know what to do my weakness is phenomenal. Is that very common or it could be other disease like Sjögren's syndrome - hypoparathyroidism, progressive multiple sclerosis- Please helpi

[Nackapan]

I realise this is a big concern for you.

I had muscle 'wasting.

This happened as bedbound and lost alot of bodyweight in the initial loading doses over 3 years ago.

It was explained that this happens .

Mainly by my daughter who saw more specialists thsn me and young.

Deep hip pain

Weakness in whole body.

I only got to see an NHS physio twice .

He gave chair exercises as although walking good he explained it was using my muscles but nor strengthening them?

Also we all do things on 'automiatic'

But can't rely on our bodies at present.

Standing g on the spot uses many muscles.

Staying upright with balance issues

Uses loads of neck muscles

Repetitive movements ect

This is my experience.

I also have paid to see two physiotherapists in the past.

Have a mix of vestibular physio

And strengthening physio

I've been a bit lazy with of late as trying to do some every day activities like lifting a wet laundry basket.

Trying to remember all the manual handling courses I've been on to put less strain on muscles.

Keeping loads close to your body.

Slpitting loads.

Think before moving.

I was told by a neurologist ovef 2 years

'No quick fix'

It annoyed me at the time as no explanations if what to do waiting for a 'slow fix'!

However he did say to continue with a steady b12 frequency .

The only one to give any credence it is the b12 deficiency causing it all.

Bad falls muddy the waters but probably in the mix too.

I've never been to the gym or been sporty.

I'm talking about very gentle exercises.

Perhaps you could start small but daily and get some help from a physio. ?

See if it helps you.

Circulation is interrupted ect with deficiencies.

You have alot of knowledge.

I know are trying very hard to get better .

Just giving practical things that may help you.

I m Presently on an NHS waiting list for vestibular physio as ENT asked what i thought would be helpful. ?

Dealing with symptoms again

Otherwise s disappointing telephone consult not Willing to investigate causes didn't have any reasons.

Hoping other members or new members can resonate with you .

Take care 🙂

[deniseinmilden in reply to Nackapan]

Thank you for your patient reply Nackapan

[Jillymo]

A severe vitamin B12 deficiency may damage nerves, causing tingling or loss of sensation in the hands and feet, muscle weakness, loss of reflexes, difficulty walking, confusion, and dementia.

[Hamayeshguy]

At the beginning of my symptoms right after megaloblastic aneamia ten months ago roughlyI started very gentle exercise but in that time I didn't have much care about taking enough B12 and iron or active b complex and it rapidly developed my symptoms but that also helped me to ditch my dizziness! But muscle extreme weakness started which wasn't bearable and I was in agonizing situation. Then switched to new regime if injection and taking all required supplements. Then my symptoms almost slowed down in developing. Today by sticking to firm regime of injection I think I have managed to reverse my symptoms but very slowly it's taking place. If I get too much stress my symptoms relapse. But stress is inevitable and Its part if our daily life so it's like two step forward one step backward in improving symptoms but I'm happy at lease it's taking place. My feet tingling is mild but numbness in hands which was completely abated but relapsed after last couple of days stress due to my travel plan and some other life condition changes. I think everyday injection is so helpful but I can't tolerate that much but in order to make hand numbness improving faster I need every day injection for one week at least. Since sleeping quality is the most important part in our journey of getting back to normal life.

[Nackapan in reply to Hamayeshguy]

Good dliw steady progress Good. I can't travel far either so stay local.

[Hidden]

Sorry to hear you're struggling so much. Can you see a Doctor to exclude the other worries you have? My daughter in law aged 23 was diagnosed with progressive multiple sclerosis 4 years ago, with appropriate treatment, these things can be treated to give you a better quality of life. If such large doses of B12 aren't helping, can you get tests done to rule out something else going on?

[Hamayeshguy in reply to Hidden]

I have done nerve electro conductivity test. Neurologist told me it's general thing thing

[Hidden in reply to Hamayeshguy]

Are you in the UK?

[Hamayeshguy in reply to Hidden]

No I'm in Canada

[ssiddi2]

i think it may be worth getting tested for MS. The symptoms are similar to B12.

[Hamayeshguy in reply to ssiddi2]

What are the tests for multiple sclerosis

[ssiddi2 in reply to Hamayeshguy]

An MRI of the brain and a spinal tap

[Hamayeshguy in reply to ssiddi2]

I have done nerve conduction test but neurologist told me it's a general thing

[ssiddi2 in reply to Hamayeshguy]

I think that just tests neuropathy. Given the severity of your symptoms, you should see a better neurologist

[Hamayeshguy in reply to ssiddi2]

I asked my GP but there is a residing neurologist in their office and they don't get me referral for other neurologist. I think the most important test in MS is ANA test which is the same for LUPUS anti nuclear antibody. MRI and B12 show the same pattern of lesion in white matter of brain. I have rheumatologist appointment in April. May get more tests. Nerve electrical conduction test also is similar to B12 in peripheral nerves. Because just the speed of conduction of some damaged nerves can show difference and number of those are not many to show difference. Just ANA test spine puncture(fir sampling spine fluid) test and some different symptoms like eye movement pain or some colors like red get paled or one eye can get blind ( in progressive MS and in relapsing type relapses) otherwise other symptoms bare the same but person with low B12 can show improvement by taking that. In my case I was low in feritin and symptoms was unbearable then I started to take iron and raised my feritin so lots of pain stopped. But I don't know is that normal to get new symptoms to show up with after nine months if injection. But my injection wasn't enough and it was like every ten days of cyano without taking another B12. Four months ago I started taking mega dose of slow release B12 and two minutes ago I switched to hydroxocobalamin with two times a week injection then reduced it almost three weeks ago to every other day since I didn't have tolerance and high dose of oral B12 helped me to raise my tolerance. Another factor of difference between people with B12 deficiency and MS is this intolerance to B12 injection which some B12 deficient people show. In MS people without deficiency it's highly unlikely to show intolerance. With people with more than five years of deficiency it's normal not to show any response to treatment and after six to eight months improvement start to show up but at the beginning symptoms get worse and even new symptoms start to show. In my case since it was assuming megaloblastic aneamia ( which still officially I didn't know) can take longer treatment show improvement. My arms symptoms showing improvement but trapozoidium muscles improved and in deltoid and forearms still feel numbness. Im so addicted to sleep on one side and my hand go under pillow and the other stay in hugging position of anther pillow. That's why I excerte too much pressure on my hands muscle during sleep. My symptoms started one year ago before I start cyanocobalamin self injection I think regularly taking pills was more effective than cyanocobalamin injection every ten days then I started light exercise which was detrimental in improving symptoms and my symptoms developed exponentially. So forced me completely change my B12 intake plan and starting to raise feritin, and taking mega dose of B12 and then switch to hydroxocobalamin injection then to every other day injection band every day injection. The funny thing is I tried to inject on day Hydroxocobalamin and next day cyanocobalamin but it's look like cyanocobalamin time of action is so slower than hydroxocobalamin and it was so badly execerbating my symptoms next day when I injecting hydroxocobalamin. SibI stopped that. But that much of loading dose I think was so helpful in diminishing symptoms. Now I understand loading dose concept. I mean overflowing if our system with B12 is necessary to reach damaged nerves cytoplasm and mitochondrial matrix.

[ssiddi2 in reply to Hamayeshguy]

this is very helpful for me so thank you for sharing. this is all still relatively new to me. my symptoms started out slight over a couple years until last spring when I had severe fatigue and weakness after a few days of intense exercise. any exercise seems to be a clear trigger for my symptoms. when i experienced my first severe bout of symptoms including constant yawning, nausea, fatigue, weakness and facial numbness, my test result showed a b12 of 122. i started on weekly injections of cyano and all of my symptoms completely disappeared after about 3 months after they first appeared. i made the mistake of stopping injections and after about 3 months, i started seeing slight symptoms again. at that point i tried to get monthly injections but it didnt help. my symptoms grew worse so I started on weekly injections again and i've been on them for 4 months but my symptoms seem to come and go. i have an appointment with a neurologist next week to see if it makes sense to get tested for MS but I still think its just an issue with B12. a lot of recent studies say people with MS also suffer from B12 deficiency so it doesnt hurt to rule it out. I may try switching to two weekly injections of hydroxy instead of just one. The interesting case about me is that I dont seem to have any other deficiencies and my blood work is normal. I suspect I have some genetic abnormality at the cellular level that makes it difficult for my body to absorb and use b12 efficiently.

[Hamayeshguy in reply to ssiddi2]

Can you share that study of people with Ms have B12 deficiency. Because some studies show people with B12 deficiency may misdiagnosed for MS. But I think just neurologist can rule out multiple sclerosis it requires more investigation. Rheumatologist should be seen for ANA test and even MRI can help for finding some differences in brain white matter lesion pattern which requires lots of experience to differentiate patterns of lesions in different senarios. Nerve electrical conduction can't rule out MS alone.

[Hamayeshguy in reply to ssiddi2]

These studies found that spine B12 is lower than normal not blood serum. There is no difference between Ms people and without Ms people's b12

[ssiddi2 in reply to Hamayeshguy]

pubmed.ncbi.nlm.nih.gov/191...

This was the article i was referring to but you're right, I believe there are more recent studies that dispute this link. I think it is unclear if there is a link or not. What is known, however is that the symptoms are very similar so i think its sometimes a good idea to rule it out.

[Hamayeshguy in reply to ssiddi2]

Those studies are old and new studies found that just 11% of people with neurological symptoms refered to ma department have MS

[Hamayeshguy in reply to ssiddi2]

No one exactly knows what factors trigger MS but it's look like chronic stress and some viruses or even some vaccine can trigger that. Hot weather or very cold weather can also facilitate that. But genetic play an important role

[Hamayeshguy in reply to ssiddi2]

In the meantime there are two different MSRelapsing

Progressive

[Hidden in reply to Hamayeshguy]

My daughter in law had pain in her eye, she thought it was migraine but turned out to be progressive MS. She has been on a clinical trial and had two massive chemo like infusions meaning no new brain lesions for a year+ . She is low on B12 but takes oral B12 and lots of marmite. She gets tired but has two young children, she doesn't report muscle weakness. She's apparently had MS since she was 17, she's now 23. She says the only symptoms which led her to the Doctor was constant orbital pain in one eye. Hope that helps.