Just an update on self-injecting...

[Lisasones]

Hi everyone, just thought I'd put my recent findings on here having decided to start self-injecting from January 2015 (it might be useful to someone somewhere)

I got diagnosed June 2013 with PA and (being afraid of needles) tried to treat myself using sublinguals (methyl) and had no improvement, I finally gave in and went last January (2014) to have the loading injections (only three injections a week for two weeks despite me having a lot of neuro symptoms - I hadn't found this forum then and didn't know I should have had more and my GP certainly wasn't forthcoming) - I then went on to one injection every three months and still felt I was getting worse... long story short, lots of arguments and standoffs with both GP and nurses and all refusing more frequent injections and no blood tests - not even to test folate, vit D etc.

So, after a lot of research and nerves I ordered my own cyano from Goldpharma and needles from Medisave and my partner thankfully was happy to administer the jabs after watching several you tubes vids on how to do IMI's, how to open the ampoules etc - he is fantastic and I'm very grateful that he will do this for me - sometimes it stings more than others, but he is as good if not better than the nurse was - and the relief of being in control of it all does a lot for my mind set.

So, I have been having two injections (IM upper arm) every week since the first week in January, a lot of the symptoms have lessened or gone, some like Tinnitus are still there, my digestion has calmed down a lot, and I now go to Zumba twice a week and a power walk once a week (would have been unthinkable before) and my concentration is better - (I have been taking a multi vit and a B complex too) - my sense of taste and smell has improved (that was weird, one day half of my taste buds seemed to work, the sour ones, whilst the others didn't, food tasted awful but as the week went on they all came back) and so I reached a point at the end of March where I felt I could reduce it to one injection a week and so far that has been ok - in short (and sorry this has turned out so long!) I needed THREE MONTHS of loading injections before I got to the point of improvement where I could reduce it to one a week, not one every THREE MONTHS!! Maybe this was how it should have been all along and someone made a typo!! LOLOL!!

Anyway, that is just my experience and I know it will be different for everyone, but I thought posting this might help those of you who really feel they are not getting enough from their quarterly jabs that NO, it may not be just in your head after all and your symptoms should really improve when you get the dosage right!

Ok, well I'm off to fight another battle now, I have all the symptoms of Hashimotos Hypothyroid and a GP who won't even send me for a thyroid screen - NEXT!!!!

Have a great week lovely people X

[engels]

Congratulations on taking control of your own treatment. Assuming you are in the UK, it's interesting that you chose cyano not hydroxo. Was there any particular reason for that?

[Lisasones in reply to engels]

Hi Engels, I had hydroxo first, reordered cyano by mistake, started to use it whilst waiting for the hydroxo to arrive and found my sense of taste and smell started to return, so I now mostly use Cyano but put the odd hydroxo in as this seems optimal at the moment for me... it is a bit of an experiment in general though

[Hillwoman]

Glad to hear you are feeling so much better. For Hashi's, head over to the TUK forum here on HU or try the TPA forum - both are very helpful.

[Lisasones in reply to Hillwoman]

Thanks Hillwoman, yes I've been over to the thyroid forum on here for some research (and a good moan as well), I'm starting a supplement experiment regime of ndt and adrenal cortex and a gf diet to see if I can make some headway myself as short of shooting my Gp it is the most proactive thing I can do - if it seems I need more thorough help I'll have to bite the bullet and go privately but I'd like to try and save myself the expense initially, it just seems wrong to have to pay for a consultation, pay for treatment and then pay N I as well, but in the end I know my own health must take priority over cash.. I've had such good results with self administering the B12 injections it's worth a try I thought.

[Hillwoman in reply to Lisasones]

Definitely worth a try! As for shooting your GP, it occurs to me that it may be a start - as Max Planck said (I paraphrase), science progresses one funeral at a time.

[Chancery in reply to Hillwoman]

Ooh, science progresses one funeral at a time. That's my new screensaver. When I stop smirking. Although I might make mine medicine progresses one funeral at a time

[Hillwoman in reply to Chancery]

Yes, I think that's an improvement.

[Lisasones]

Oh I really like that Hillwoman! Here's to one funeral at a time then!

[Lisasones]

Just an update to this post, I had to go back up to two a week as started to get some symptoms back...