You must be so sick of this Nackapan I do feel for you,it’s criminal having to waste all that energy with these idiots,if it’s not broke leave it alone would be a good motto for them,why can’t they see that if the patient is doing well on a particular regime then let it continue, the stress it’s causing you is terrible.I do hope things improve they need a good kick up the Archie,all of them. Another case of closing the ranks when their in the wrong.
I’ve actually just found a great private clinic run by two gps in Bedford and they are fab.
I’ve been having physio there for two weeks now and I can’t believe how I’m feeling,I’m so glad I refused those injections for migraine even though the pain never stopped week after week,I wanted to know why, not mask it.
Physio told me I’d trapped nerve in my neck and my neck was tight like guitar strings and not supporting head properly and after the first session with him I didn’t wake with one single headache for 5 days I couldn’t believe it,I had another session yesterday and we agreed to go slowly as my muscles are so knotted all over my body it’s very painful.i also notice that my Morton’s foot pains not so bad yet he’s not touched that.
I had a thyroid scan done there too very gentle,all ok and sent me into gp for a chat in case I had any concerns about anything else,saw lovely chilled gp ,very handsome lol,chatted about p.a said you’ve got a good system going s carry on doing your self injecting at a comfy frequency for you and we are here if you need us or just for a chat! I thought I’d fallen asleep and woke up in la la land lol.
I’ll never go to another private consultant now I know these lovely people are there and if I need a referral for anything I’m confident they’ll do it on the nhs for me without a song and dance,they are all gps and gynies and medics from Bedford hospital,some work between the two,private and nhs.wish I’d found them years ago.They have a phlebotomist there too and most blood tests are next day results,very handy for us who struggle and pay over the odds for blood tests then finding a nurse to do it.
Best of luck Nackapan ,there are some good people out there it’s finding them that’s the trick isn’t it.x
I do hope you continue with your 2 weekly injections and you get what rightfully is yours.
It’s farcical, and stressful for you.
A nurse can question doctors’ decisions but they are not autonomous practitioners . She wasn’t acting in your best interest (in fact she has /will have caused ill health - stress of it all, plus worsening symptoms) and did not know your history.
Personally, I’d look at the practice website, find out her surname and write to the NMC (external agency) because she is not a neurologist (specialist), and not a GP. So, she does not have the skills nor knowledge to make such a clinical decision. So, working beyond her role and scope. As you know, notes have to be legal, legible and contemporaneous. But that takes time and energy which I’m sure you don’t have.
Yes. She hadn't prepared before I went in.Very flustered
I'd never met her .
She didn't/ wouldn't listen.
Yrs she has the right to question but not without finding out more
To totally disbelieve me a mistake.
As was to totally literally leave me out in thr cold
Every contact including talking to her on the phone when I simply asked her to correct her notes saying I think you just put monthly instead of weekly.
She messed up even further
Everyone can make a mistake.
I know exactly how I would have dealt with the matter.
I've always been hot on record keeping.
This is so blatant that its evidence in its self she simply doesn't accept its her mistake
Km giving her another chance to realise what she's done.
Then will have to escalate it as over a month now .
There was an initial acknowledgement by the previous surgery practitioners that you were a complex case, presumably why your treatment was to be different from the "norm", and that, due to improvements, your IM injection at the surgery could later be reduced to six weeks from four. Self-injection SC sanctioned and B12 supplied. For this treatment frequency, they had referred you to a secondary care specialist and acted on his advice.
Are the new lot really prepared to ignore all of this ?
The new practice may not want to continue with treatment at this level - but you have yet to have a label attached to your condition. Without knowing what is wrong with you, they cannot tamper with your treatment - which has shown to be beneficial although progress very slow.
And cannot do so without the original advice being overridden at secondary care level......and who would want to take that risk, without at the very least seeing you ?
Wouldn't they first have to call into question your current treatment - either type / frequency ? Which means the new specialist would have to find a name for what you have first, before altering your treatment.
Without seeing you ?
Well that will slow it down, won't it ?
Meanwhile......well, you are still a complex undiagnosed case , aren't you ?
No-one should have to do all this alone, especially when they have a chronic condition to deal with. Do they still not have any understanding of the impact this has had on your life ?
'My' g.p is sti there and hax dpojen with one if the partners on my request.
She's seen me from the start kn 2018 snd ordered tgd b12 serum blood test amongst s losd of others. Shd hax less clout as salaried and pulled out of applying yo take the practice over.
The partner has emailed a neurologist to see if my b12 frequency can continue.
On his notes he has put I'm skeptical of his reasoning that a neurologist will have enough b12 expertise to 'santion' my regime without knowing my case.
Words to that effect.
It's ludicrous the letter on my notes isn't enough.
It's from a neurologist
It covers his back ( the existing letter)
That's his concern he says incase its harming me
The seperate issue of correcting my notes becoming a nightmare and will probably block next weeks injection.
I'm prepared this time though and will point the nurse to the doctors entry.
Nothing to be changed until partners meeting abd reply from neurologist.
Also the text I got from 'my' gp
I will also insist on the bright lights going off .
As can't think straight with them on.
It states 2 weekly in his write up.
Being prepared helps.
Have to admit it is stressful .
Hate being disregarded In this way.
I've tenacity.
However as theve no understanding that yoh are most vulnerable when the injection is due
I'm having am extra one as not been great anyhow.
The letters all make perfect sense if only a doctor is told to read them.
Thd stupid system of sitting in s pile to be scanned on should only be done after they are read not before.!!!
No acknowledgement inexcusable.
I've since written an update on ongoing symptoms.
B12 tablets trued.ect
Changing frequency tried .
List of food I eat.
Supplements i need .
Addressed to new partner I saw for my review.
Also stating on nothing else and b12 is tge only thing that hax brought I.provements slowly with time.
Good for my records too.
What thd practice Manager is doing is amazingly .....nothing.
6 gp partners to agree .
I've plenty of b12
Many going through this sort if thing haven't.
I'm letting my husband step in to type a formal letter of complaint if needed .
I've got the know how .
The help from all the links .
Just not the typing skills.
Writing still a ovef tge place with visual difficulties.
Would prefer to do it myself.
They have no idea .
Lights
Can't use a landline
Text disappearing as i write.
Sk many continue to be put through reviews .
Hopefully all of this snd your reply will also help readers
If you need any help, let us know. Keep us updated.
This takes its toll so I think a sensible idea to ensure you are as well as you can be going in to this.
Assuming that the first neurologist was advising ongoing treatment not miracle cure, why even try to stop it ? makes no sense to me.
Anyone ever say to you "what would you like us to do/ test for /rule out ?"
After bowel cancer ruled out on 2wk pathway, I had referrals to haematologists, a dietitian, gastroenterologists, neurologist, rheumatologist and ENT, oral medicine, inherited metabolic diseases consultants. I had scans, ultrasound, x-ray and MRIs, SIBO breath tests, IFAb test, homocysteine test, methymalonic acid tests, bloods and DNA tests. I don't feel as if there is anyone else to see or any more tests to request.
If there was anything else to look for, other than B12 deficiency, why hasn't anyone been looking really hard to find it for you ?
Thank you.I was originally diagnosed with BPPV vertigo)
( Oct. 2018
Got worse heart palpitations electric shock ect
Retired doctor friend said to call an ambulance as Gp not doing anything when I called.
Refused an ambulance by paramedic on the phone as busy .
Usual Q. On heart attacks .
Told to make my own way.
Got a lift to A and E following day!
Heart monitored usual obs. No bloods.
Got s CT scan as I'd told them I'd hit my head hard (I had) but 2 months previously
Pupils unusually dilated in a bright room.
Quizzed if taking recreational drugs.
Not believed.
Told an anxiety attack
Discharged.
Kept going back to Gp
Epley manoeuvre failed
Another doctor appeared
She ordered bloods a brain
Brain mri scan
Successful epley manoeuvre at home via u tube !! 3rd attempt
Only thing ever found was
B12 106 pg/ml range( 200-900)
Had to push hard fir treatment as not informed of result.
Kept ringing.
Booked in a b12 injection on advice agsi.
Got loading doses told b12 injections needed for life.
Referral to NHS neurologist.
A sit in at the surgery
After 5 weeks off b12 injection
Had tried high dose sublingusjs tablets of b12 . Did nothing . Bedbound.
Result from 'sit in ' and consult by default as refused abd had asked to speak to the practice Manager.
back on every other day until no further improvement by ' chosen gp)
Feb 2019 NHS neurologist
To wean off b12 as poisoning me??
To take up yo 50mg amytripyline daily .
Had been prescribed thus before. Had it but not used.
Discharged to gp care
Worst migraine fit like event
Same day.
111
Advised to take amytripyline.
Knocked me out.
Weaned off amytripyline 10mg as made me worse after initial sedation effect.
Then offered a barage of antidepressants.
Didn't. Knew I wasn't depressed.
Very wary of clouding symptoms if antidepressants used fir a trial of pain relief after bad experience
Pain killers used
Hrt patches trialled as gp convinced me over months if caused by a hormonal inbalance ( menopause)
It would help.
A nightmare of horrible symptoms on top.
Resulting in a 6 day migraine.
Bedbound again.
Weaned off after 3 weeks.
Offered s barage of different antidepressants. Beta blockers anti seizure medication.
Prescribed diazipan 3x daiky !! No mention of addiction.
Took 1/2 dose 3 seperate occasions to knock me out to prove I wasn't getting rebound headaches from overuse if painkilers . Stopped paracetamol for ? 3 weeks ?
Gp
and neurologist agreed not rebound.
Advised by gp to see a different neurologist.
Paid .
As to be re referred back in another 20 week wait predicted .
That's when I hit on the neurologist by chance that had done his own research of b12def/ PA as had it himself.
He could not cope on the NHS regime.
To stay on 2 weekly . It would take s long time . No quick fix
Also offered
Propranolol for headaches.
At a later date a yesr on
Letter condoning continuation of 2 weekly b12 injections . Sc at home IM at the surgery.
(Covid. Staff short bound get appointments . Had bought my own with valuable advice from thus forum)
Gp rang out of the blue sanctioning thus regime. Greatly opposed by peers .
I was to take responsibility for sc I jectios as nothing is without risk.
After 3 years in eventually got an ENT referral after pushing.
Telephone only . 4 mins. To go for a
Hearing test but that's all?
I'd had one already a yesr before at my opticians .
Went to stay in the system.
No idea what was put on that referral . He really wasn't interested.
He asked what i wanted??
Reasons . Diagnosis??
Referred for NHS vestibular physio
He refused a face to face.
So no examination.
Only thing j could think of ax wax hoping fir more reasons fir symptoms 🤔
So yes despite picking one gp out of 6 at the time
They still refer back to mri 'okay'
i after discussion with neurologist got a second brain and neck one. Hoping fir full spine.
Nothing sinister seen.
So if anyone reading you are not alone in this.
I will plod on in this process.
I have lots of b12 .
Prescription and bought at present .
Definitely had some things ruled out.
More investigations needed but don't now know where.
Do need explanation of symptoms.
Have been told dietary in the pastcause of low b12
Hence the food list .
So important to keep any results
Fortunately I was good at record keeping in my job also at details.
Obviously when ill impossible.
Hence a diary very useful.
My brain is definitely 'waking up'
But I'm not ale to put too much energy in thus.
Can't leave it though.
I would find that harder .
Not me.
The pace is the hardest .
It's so slow.
No acknowledgement of any letter or email
I naturally react quickly and sort stuff .
Had to in past jobs. .
It really illustrates the fragmented services.
Ridiculous time and resources wasted.
Why not bring me in for a face to face??
At least informed of their decision making about my health.
This is how things have been dealt with.
Tedious .
Repeating loads if stuff.?????
The last receptionist I spoke to fir any update.
Said she wasn't speaking to me if rude.
Put me on hold and then cut me off.
I rang back after 42 min wait approx got through .
Another. I said simply I wasn't rude .
Check the tape.
Listen to it.
Put on my notes I require feedback on correcting my notes as due a IM injection and these mistakes might block it
Nothing.
That was 2 weeks ago
So booked it.
Watch thus space as they say if anyone still awake after that lot.
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Update on my partner 
Update and Feeling Kicked…..
Self injection update - as promised
