Hi I'm trying to get my jabs re-approved for 8 weekly after my doctor claims she didn't agree to then a year ago. Initially she outright refused but after quoting lots of useful info from this site she consulted hematology who advised 8 weekly if signs of neuropathy which she says I don't have so she is keeping me to 12 weekly.
I have written a letter back reminding her that the symptoms I described last year when we moved to 8 weekly were:
-Tingling sensations in my hands and feet
-Stumbling or bumping into things
-Sharp, stabbing pains in my hands and feet
-Pain in my hands when gripping items (very much like carpal tunnel type feeling)
-Light headedness – sometimes having to sit down suddenly as I feel very dizzy
-Sweating even when not hot
-fatigue
-brain fog and difficulty concentrating
I think the first few of those count as neurological symptoms but don't want to go up against her on it if I'm wrong!
Thanks
Clare
Written by
Clare184
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Thanks fbirder, if she won't let me go back to 8 weekly I think I will try another gp, I was actually starting to feel something close to normal on 8 weekly jabs so can't bear the thought of going back
To my mind, tingling, balance problems, brain fog would usually be considered as neurological..not so sure about others. I am not medically trained.
Might be worth thinking about whether you have any other neuro symptoms you have not mentioned to GP and making sure GP has list of all of them eg word finding difficulties (nominal aphasia), proprioception problems plus others
I agree with fbirder that seeing a neuro is a good idea. It's your right to ask for a referral although GP does not have to agree. I put requests for referrals in a brief, polite letter to GP along with evidence eg symptoms, extracts from documents etc that support my request.
I'd suggest being well-prepared for any neuro appt as there are some neuros whose understanding of B12 deficiency is not as well developed as it could be.
"think I will try another gp"
If you're in UK, PAS support groups can be a good source of info on helpful GPs. You would need to be a PAS member.
Thanks sleepy bunny, yes I'm in the uk. I have written a very politely worded letter (so that it's on record) outlining the symptoms I brought to her attention last year and referenced the NICE guidelines which she referred to in her original letter to me, I ended it saying I'm hopeful that the correct treatment can be reinstated at my next appointment which is on Tuesday so fingers crossed!
So grateful for all the amazing advice on here honestly don't know how I would have got this far without you all.
If she still says to stay at 12 weekly then I'll switch doctors and definitely thinking of joining PAS anyway.
Forgot to say that I sometimes include a request in letters to GP that a copy of letter is placed on file with my medical records. Pretty sure in UK, letters to GP are supposed to be placed on file but I like to make doubly sure they are.
Will add that sometimes writing letters to GPs can irritate them but I think you have to weigh up pros and cons. In my case I stopped worrying about upsetting GPs when I realised that if I didn't get treatment I was probably heading for spinal problems and dementia type symptoms.
Wish you all the best Clare184. It's a real nightmare with these doctors. Please keep going. I have started a petition today hoping to get enough signatures to take to Downing street and hopefully get things changed.
I don't have Facebook so please contact me via personal message function here on HU if you need any further information.
Not yet but if you would like to e mail me at my address then I can reply to you. Only trying to get a new Facebook page up and running so that might be better. Not very clued up on it all and quite honestly apart from letting some friends know, I am at a loss. Might have to get my granddaughter to help me...or possibly my 13 year old great-grandson who is a whizz kid with technology. Even built his own portable tv with a laptop screen for telly and now he carries what looks like a briefcase to school , and at break times he and his pals go down to the edge of the school grounds and take advantage of the free Wi-Fi from the little pub over the fence and they watch films or whatever. So he might be the one to ask 😀
Hallo. I have peripheral neuropathy from 2 years with such as your symptoms. I have myself shots 3 times a week. From the beginning of 2017 i had more than 150 shots. I feel much better. Better inform yourself from this side than the doctors. Be happy and all the best.
Just to update my gp has now agreed that 8 weekly jabs are the right course of action I'm so relieved! Thank you to everyone on here who makes getting through the hard days easier ☺
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