Saw G.p .She had made a mistake on the notes!! No apology but asked if I got the injection yesterday. No explanation or understanding of symptoms I described ti her I'd not had before. ..prior to injection. 0430 out of bed and inner shakiness and so hot. Not visible and not hot to the touch. Tinnitis like it on 'speed" didn't know whether to move could move or was going to pass out. New so horrid. Took 20 mins to .calm head by keeping g very still laying down. Then headache started. Very odd. Anyway. I can have 2 weekly b12 hydroxocobalamin injections. She wants to monitor still. So relieved.
Will stick with 2 weekly at present and see how I go. Didn't broche sc or si yet as just recieved at present. Too weary .
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Nackapan
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so happy you are feeling some relief. I did have the wake with shakiness/dizziness before being diagnosed. It is overwhelming and exhausting. Get lots of rest and keep alert about your symptoms. I have had to transition to once weekly injections.
Yes . Sorted for time being. Not going to push again to get functioning. So difficult . Hopefully if I stay with 2 weekly and Pace. (Starting to hate that word lol) I'm naturally a bit erratic and once on a mission see things through. Hard to change to such an extreme after a year of 'confinement'
But yes good news and more education for docs on B12 policy dosent fit all.
We have been fortunate in that hubby seems fairly ok on 12 weekly top-ups. I think he is probably flagging slightly at about 10, but he says he feels no difference. The vitamin d3 and folic acid made a massive difference to him as well as being taken off metformin and his PPI dose being reduced.
He takes each day as it comes, but manages to work 4-5 hours a day and most of his aphasia has now gone.
Glad he managing to get on so well. I found getting my d3 levels uo helped too. For some reason I absorb enough folate from food unlike iron and b12??
I took folic acid 400mcg g then 200mg in a multi vit. I'm above normal range now
I know doesn't make sense but 2 bloods csme back . Raising my ferritin leveks has also helped. I'm on no medication to come off. So hopefully a bit more time and healing needed.
He was diagnosed last October following a quadruple bypass in April and then a stroke 8 weeks later. He had been going down hill for several months, poor memory, short temper, low mood, balance issues, constant tinnitus, no appetite - we were both worried about dementia or Parkinson’s.
One morning he woke up feeling awful, got sent to hospital for a ‘precautionary blood test’ and came home 4 weeks later having had a quadruple bypass! He was anaemic and put on iron which didn’t do much and still had no appetite. He had just started to improve and was going cardiac rehab, but woke one morning very confused and unable to speak or see properly - he had suffered a small stroke. Another month in hospital followed with very slow progress. He was constantly tired and muddled and very unsteady on his feet and clumsy. He was put on folic acid as his folate was low. In October he had a blood test to check his folate and then they tested his b12 - don’t know how low it was but it must have been low.
No information- just 6 loading doses then 12 weekly. He continued to get worse with the first few shots but slowly improved after that although it was one forward two back for a while! The breakthrough came when folic acid and vitamin d3 were added into the mix and his other meds were changed in March this year.
He would probably improve more with more b12 but he’s ok as he is - he was 70 earlier this year. He doesn’t walk far but is able to drive.
Goodness. Same time frame but very different. He has done remarkably well to function at what he is doing.
Very difficult for everyone.
I collapsed Oct 1 2018 in the garden but couldn't get up. I thought a stroke as right side of face stuck to the floor. Crawled indoors. Vertigo. Then bad neurological symptoms and then migrains ect ect.
On no Meds previously and well but had been extremely tired and alot of stress.. I thought the lack of energy the menopause I'd been having falls and very clumsy. One bad fall 5 weeks before. B12 was 106n/g found in Nov. 18
Got alot worse at first on injections. Bedridden. Then found this forum. Had more regular injections sorted and started to make progress. A delay though of several weeks.
Anyhow come a long way but have a long way to go.
Remarkable your hus bands recovery.
I'm strong willed and positive most of the time so will get there I hope .
I have followed your story on here -you have come a long way since the early days! I don’t think I would have coped or that we would be where we are without the forum. I asked for the d3 and folate to be tested because of the knowledge I had gained from this forum. Also reading the posts made me feel less alone - just cross that he hadn’t been tested or monitored years earlier as it may have prevented the heart situation and its consequences too! I don’t yet have the courage to ask for historic blood results but I will!
I hope you keep improving and don’t have to fight again for your injections.
Glad to read you're going to get jabs every two weeks.
So happy for you Nackapan!!! Soon you will be back to feeling better. I also struggled with those hot spells and headaches. I am getting to the end of my loading injections, and I am not making it to the end of the week and the symptoms return, so I will have a take with my doctor tomorrow. Also I am having an upper endoscopy in December, I'm trying to find out what is causing my B12 def. Best of Luck to you!!!
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Cherylclaire with good news!
