Getting concerned, I have been on twice a week injections since October. I started with Hydroxocobabalmin and then switched to Methyl in December. I cannot say I have made any progress but at least things were not getting worse until this past week.
Original Symptoms
Burning, tingling in legs
Leg Weakness
Fatigue
Shortness of Breath
As of this week I am also getting ramped up Tinninuts, tingling in my arms and numbness in my hands and bury vision. I have had days recently where I felt better but the are few and far inbetween.
Question I realize it's normal for symptoms to worsen before they get better but is it normal for new symtpoms to pop up this far out? Can others share there experiences?
Folate and iron levels are fine and I take electrolytes regulary.
Thank You
Written by
fx9898
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With neurological symptoms my b12 injections were EOD. I noticed I was dropping backwards on days not injecting so increased to daily with my gps approval.....I then started to improve. I did try methyl but it made no difference. The frequency did. I also took a basic b complex with folate. Im changing tbat to a less potent one with less b6 in it. After 6yrs I've not been able to.lower the frequency of b12 injections without symptoms returning.
I am very different to what I was 6yrs ago. Much improved but it's been a gradual improvement.
Yes I live in the UK. I moved GP practises and had to fight for b12 all over again. Thankfully my nhs neurologist supported me but the gp practise had mutiple meetings about my b12! Stopping of prescribed medication seems to occur without any thought of the consequences, and we are left to fight for our health on the nhs......
True, I could write a book on b12 deficiency, and the nightmares I've gone through when moving homes and GP's, took one to the Ombudsman, but they backed the GMC who said it was three monthly , even though I'd been on monthly 15yrs, I ended up in wheelchair at 60, from walking stick, aft'er being stopped 3months. I am 74nnow and inject myself as well as nhs once monthly, so whenever I feel low, I inject. Get it from Germany : Juvalis site b12 Depot Hervert 100x1 ml £106 including delivery, had new delivery yesterday, get my injections from RayMed uk...When you reach mid fifties you need double the dose, which I was denied, but I didn't know that then.
They said I had MS in 2000, I argued with them it was b12 deficiency, neurologist said in 2014 that the small brain infamation haad got no larger in 14yrs, I told him " yes because I haven't got MS" you can tell by my strength, my sharpness etc😳
So sorry to hear this but sadly not surprised. Where the nhs is concerned am increasingly jaded especially when dealing with my GP's.
I've also been fighting for the return of my thyroid medication. I cant live without it all the medics agree and its there in eriting on my medical file!! String of nhs endo says yes she needs this med.....yet stopped after 17yrs by GP surgery backed by ICB..... MP & even Health Secretary are involved. It's a disgrace. Any residue of trust I had left in the nhs system is destroyed.
I won't go on about the 'trying' GP consultations I've had over both these conditions. Just have no illusion that I fought extremely hard to get ny b12 back.....stopped twice in one year!! And am fighting even harder for my thyroid meds.
The real genuine care for patients seems to have left the NHS and insane beurocracy has taken over.
Yes- it happened to me, but in retrospect it was possibly very old symptoms returning as the nerves healed once there was some B12 to allow that to happen. I’m happy to have most of that done now . There were more rough days than good ones for a while, and I still have to be careful I don’t do too much on the good days, but overall it is improving 😊
It has been a roller-coaster- feeling better for a bit then going down again. I have been self-injecting hydroxycobalamin for 14 months, first EOD but every day for more than 6 months now. I am so much better the last 2 months, just still lacking consistent energy. I'm starting to stretch out injection intervals a bit now.
Methylcobalamin can have side effects. For me like a cup of Costa or Starbucks coffee. Agitation , palpitations, insomnia, to name few. I only use hydroxocobalamin now.
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Worse before better / breathlessness
How long did it take for you to feel better?
With normal levels of b12 can you still be deficient 
New neurologist?
Feeling lousy again
