I had untreated PA for 20 years leaving me very ill and bedridden most of the time. I was a patient of wonderful Dr Riar, may God protect his dear soul. Under Dr Riar's care from May 2012 with daily high dose injections of methylcobalamin and occasional infusions I began to make a near miraculous recovery. My intractable bowel problem started to heal, pulse, heart rate and blood pressure went in to normal range, I came off all thyroid meds and my brain started to work.
Now worryingly there is a methylcobalamin shortage and I can no longer inject daily or even every two days and my symptoms are returning. I am feeling faint, bowel problem and profound exhaustion is back. I've tried injecting with hydroxo but it does absolutely zero I don't seem to be able to convert it to a useable form.
I managed to get a small amount of extremely expensive injectable methyl from Germany. On PA Soc advice I am trying Better You under the tongue methyl spray to supplement the injections. This way I am trying to ration injections down to once a week which will cost me £5.
So far still feeling ill with pattern emerging of one good day followed by a dreadful day of being confined to bed. My bowel problem and food intolerances are reappearing. My core energy is running down and I am losing the stamina I had gained. I will now begin to monitor blood pressure, temperature and heart rate, (in the way I was taught by Dr Peatfield) to see what that is doing and to provide an objective record of what is happening. It seems a cruel fate to only have been well for 4.5 years of my entire adult life to now be having my refound health taken away. It is awful that so many of us up here are finding ourselves in this position. We will survive, we will find a way to be well.