Numbness in shoulder arms and trapozoidium muscles, please help I can't sleep

[Hamayeshguy]

For one year and half I have neurological symptoms which comes and go. I used to take pills for seven months btgen started to inject cyanocobalamin for couple of months about 50 ampoules then switched to hydroxocobalamin injection now 8 ampoules and also take 15000 mcg pills a day. My frequency of injection us two ampoule per week. But after tooth infection land taking extra amoxicillin 500 now 37 capsules and having couple if nights pain and not sleeping my shoulders, arms and trapozoidium muscles have sever numbness. I had numbness before but it was resolved by it's own. Now I have weakness all if my muscles specially in my trapozoidium, deltoid and arm muscles. Every 45 minutes it wake up me with feeling cold and burning bin those muscles. I tried to setup bed in away not pressure excerted on my arms by keeping one hand out if mattress in a pillow and the other on mattress on pillows and head outside of mattress on pillow. But still I can't sleep. No splint can't match all problematic muscles. I can't sleep. After 45 minutes I wake up with feeling cold and burning and numbness in those muscles. Please help. What should I do. I asked GP for neurologist to do EMG again for myasthenia gravis I'm trying to increase injection frequency but I have no idea how to fix this problem. I can't sleep. I have double vision. Blurry eyesight, tinnitus, muscle weakness bin stomach, thighs specially right thigh and back muscles. A little improved but still long way to go. Now this tooth infection ruined my improvement process. Dentist told me it needs root canal or extraction but my get disability or fly to my family and get low price root canal but takes two more months. Please help what should I do?

[Jillymo]

I am not medically trained to be able to advise you.

I would have thought it to be highly unlikely you have myasthenia gravis. You mentioned in one of your posts that when the elivator at your property broke down you managed to climb several flights of stairs which I dont think would have been possible if you had MG.

How often are you injecting ? I found at first the injections exasperated my symptom's but apparently this is all part of the healing process. I started to inject more frequently ( every day ) then every other day and over time my symptom's decreased !

What I am saying is I felt worse before better. I can sympathise with what you are going through I and many others have been through what you are going through. Whilst injecting I also took slow release B12 tablets and even resorted to B12 patches.

If somebody had told my symptoms were due to B12 deficiency I would never have believed them - the symptoms are debillitating.

Do you have blood test results ? If you do post them on here so that others can advise you.

The situation with your tooth and the stress is not helping - I also found stress would set my progress back.

I do hope you get some respite soon.

[Hamayeshguy in reply to Jillymo]

I think I need to inject in my thighs too. Do you know how to do that. In the meantime one year and half I do inject and take B12 and it was getting better but stress caused this U think but my new symptoms was also developing Almost 45 cyanocobalamin ampoule and four months taking 15000 mcg slow release tablet and nine hydroxocobalamin injected and also taken lower amount of B12 pills 2500 mcg slow release a day and 2500 mcg sublingual. But still no tangible improvement yet

[Jillymo in reply to Hamayeshguy]

I inject into both arm's and into the top of the thigh in the muscle on the outside - you can look it up on Utube if your not sure.

It was a year and a half for me too and I am still getting symptoms. You can not overdose on B12 so keep injecting. Try going back on the slow release tablets higher strength.

I have noticed stress makes the symptoms worse, so be kind to yourself try and relax. You say you were improving so go back to what you were doing before.

There is no quick fix for this condition and 45 injections isn't very many. I ended up injecting every day. When my symptoms lessened I injected every other day. See how you get on but dont expect an overnight miracle it will take time to heal.

Are you on antibiotics for your tooth ? You need to get the infection under control and the tooth seen to.

[Hamayeshguy in reply to Jillymo]

Thank you. I remember once you said you were injecting twice a day. How does it feel to inject twice a day. In the meantime I don't know how to inject in arms can you explain a little bit. I live alone and almost in fifty days I'll travel to join my family because I can't tolerate loneliness anymore and I'm feeling so bad in this dark moment of my life It's gonna be a long flight and really I have no idea how to cope with that but I need to get rid of this bad mental situation and just being with family can help me. Can I ask you how long before your first injection you think you had B12 deficiency and what was your symptoms? Now I take 15000 mcg slow release a day but I want to buy B12 methylcobalamine in bulk or very concentrated form from china and dissolve it in bottle of water and drink whole day long. Slow release is so costly and I have stockpiled it for almost two years. But I need more. My main concern is not availability of hydroxocobalamin for more than one year for me and probably I have to ask somebody to buy it for me from Germany in case of rules get changed which is my main concern. As I talked to parcel resending company in Germany but they refused to send it to me. I can get cyanocobalamin anytime but it doesn't work for me. Once you said you main symptoms where inconsistency but you didn't have muscle involvement. In my case muscle weakness is so deep and really took long time to increase injection frequency because it execerbate my symptoms so badly and these slow release helped to raise my injection tolerance.

[Jillymo in reply to Hamayeshguy]

I think you have got me mixed up with someone else.

I do not inject twice a day - I was injecting every other day but still had symptoms. I then started injecting every day for a week then I would go back to every other day. If symptoms returned I would once again inject daily. Eventually symptoms became more tolerable . If I try to inject less frequently my symptoms return, it is still early with regard to recovery. I am also taking slow release B12 and using B12 patches. I have included magnesium and non-constipating iron tablets.

I am sorry to hear your lonely, this will also be causing you stress which is adding to your problem. Low levels of B12 can also cause depression, I was very depressed at first but my mood has lightened since starting the B12 regime.

My muscles were so weak I was unable to raise my arm's and I could barely walk, I was dragging my legs. The dizziness was so bad I was constantly bumping into doors and walls. I had also suffered with the blurred vision and terrible bone pain and numbness, it was very frightening. I have many other autoimmune illnesses so you can imagine the B12 issue on top of everything else was too much for my body to take and left me having to spend most days in my bed.

Inject into the muscle at the top of the arm where they give the covid vaccine - I inject with both cyanocobalamin / hydroxocobalamin basically what ever I can get. Mine comes from Germany.

Looking back I think I have had this for many years but it was missed because I had other serious problems going on. I suffered heart failure so my consultants were concentrating on my heart. My hematologist who I see for my sticky clotting blood condition prescribed me folic accid but didn't test my B12 !

I know what you mean when you say the injections execerbate the symptoms it does the same to me. I feel you have to go through that stage before getting better. The nerves need to be given time to repair. We might not get to be 100 % better but hopefully it will be easier to live with. Dont forget to alternate your injection site.

[Hamayeshguy in reply to Jillymo]

Thank you. Really I got so sad for your symptoms and heart issue as my mom also has heart mechanical heart valve. I insisted not to do surgery because I think she has B12 problem rather than heart issue. In my case started with doctors ignorance and my lack of B12 knowledge and straight I hit megaloblastic aneamia! I was doing well in walking and even exercise exactly before megaloblastic aneamia experience. Just I had double vision and blurry eyesight and stomach muscles badly losing strength. My symptoms before megaloblastic aneamia started with Gastroenterological and the first symptoms was lack of ability climbing stairs but it resolved on it's own and then stomach muscles started which ended in umbilical hernia on it's own. I was very physically active and also I had too much stress and just by getting involved in physical activity bI could handle that much stress. My GP based on my bloodwork was told me I need cyanocobalamin injection monthly but after he moved other doctors refused to give my monthly jab. I didn't have any symptoms in 2014 then just I moved on but my symptoms started to show up gradually till September 2020 I hit megaloblastic aneamia. Since then I try any thing to get back to normal life but it's look like it's not as easy as I was thinking. Now I inject every other day hydroxocobalamin and I want to inject every day but cyanocobalamin for the rest and if I can I want to inject twice a day as my hand numbness have become so bad and I can't sleep. This numbness doesn't go away and I can't sleep more than an hour.

[Jillymo in reply to Hamayeshguy]

See how you get on with doing the injections daily - remember we are all different in our healing. I am not so good myself today,it's like swings and round-a-bouts with some days better than other's.

My heart issue is more to do with my blood condition rather than the B12. Like you I have gastric problems and cant help wonder if I am absorbing. It is a case of trial and error and what works best for you.

Do you take folic acid ? I have read it is recommended if you have megaloblastic aneamia.

It was my feet that were numb making it difficult for me to walk. My hands sometimes dont want to work properly and my wrists are very painful. What a miserable condition, it is hard to believe so little is understood about it.

Try to relax more and remember your not alone there is always somebody on here who understands that will offer support.

[Hamayeshguy in reply to Jillymo]

I take activated b complex which contains 5-mthf or in other words methyl folate. It's required for methylation process in B12 cycle. folic acid can not be processed since it's man made and doesn't contain methyl and in this process just folate gives methyl for methylation.

b12deficiency.info

Its really a good website, I learned lots of things from that.

My gastric problem almost resolved but my muscles are so symptomatic since I have exerted too much pressure during deficiency.

But I live in really bad area with lots of harassment which I can't take it. Hopefully there is no much harassment but still I'm so sensitive. Now I know are mostly B12 related, I mean irritability.

[Jillymo in reply to Hamayeshguy]

I feel the cold aggravetes symptoms. It was very cold her last night and the stinging, burning in my legs and painful wrists returned. I find any over exertion makes things worse.

At least yo have your gastric issue resolved so you have achieved more than I ! My stomach feels tender and sore.

I would hate to live in such an awful area where you are unable to relax stress free. This must be putting added pressure on you.

I know all only too well about the irritability and mood changes that you with the condition. I am normally a very calm relaxed person.

At least we can learn from others on here and reach out when we are desperate. Take care and try not to over do things.

Interesting link I hadn't seen that one - thank you for attaching.

[Nackapan]

Get your tooth done as soon as possible. My first ever root canal filling failed as only permitted emergency appointments in covid .

So needed an emergency knf in ghf end to extract in.

Keep insisting on getting checked out in neurology.

I was alsk very ill with that tooth was painful and on antibiotics. And painkillers

Hopefully you will improve once over-the- tooth trauma.