PA and FND

[purpleabc]

Today I saw a neurologist for the first time , sadly not impressed and I am frustrated . I have already posted about my bad experience and lack of care from my Gp surgery, the same from my new surgery. I realised that my right hip was not working as it should, couldn't lift it off the bed or get it into trousers unless I lay them on the floor. Walking was fine, crossing my legs I had to manhandle it. My old GP had tested it with a tuning fork in August when I complained about strong pins and needles in both legs months ago and I felt nothing, the rest of the leg was fine, just the right hip. She said it was ok ! Definitely not eh. I put it down to old age and the fact that i had spent so long in bed.

I have seen a physio, who actually knew about PA, her sister has it and was alert to nerve damage. She organised for me to see an ESP physio who was thorough and I got a quick referral to a neurologist, he thought they would do an mri of spine/hip , tests etc. It all happened in a couple of weeks.

Well when I saw her today I took info with me about SACD and explained I was worried. Her exam was very limited, and quick. She said she knew nothing about PA and what I had was FND, the nerve in my hip was fine. She hadn't asked me to lift my leg from my hip so I showed her how it was unmoveable, and she said that I had moved it when I was unaware ???? I can lift my leg but from the knee So...........my question is, has anyone else been told they have FND and is it linked to PA? I remember reading someone having problems with the ombudsman and having lots of problems.

At the moment I am self injecting every day and have got rid of the pins and needles which were in the whole of both legs, and am more alert but still have the nerve in my hip problem. I am hoping that with lots more B12 injections it will come to life again. I bought a tuning fork and I can actually feel it's vibration slightly now .

This whole experience is soul destroying, without all the help and support from the amazing people on here I don't want to imagine how I would be. Thank you .

[Narwhal10]

I am so sorry to read. You have a firm diagnosis of Pernicious Anaemia from 2015. You are self-injecting with 1 mg/ml Hydroxycobalamin and are responding.

It is not your fault that the neurologist did not know about Pernicious Anaemia. I would write to the Neurologist’s secretary and send a leaflet from the Pernicious Anaemia Society saying they offer free Membership to the Society.

Dear Dr

I do not agree with the diagnosis because at [time] [date] by [name of doctor] at [name Surgery, Clinic, Hospital], I was diagnosed with Pernicious Anaemia.

I had been referred to you by [Name of an Extended Scope Physiotherapist and job title ], seen at [time] [date] [where] who undertook a thorough examination.

I had originally seen a Physiotherapist [Name] at [time] [date] [where]. They were knowledgeable of Pernicious Anaemia. It was they who referred me to an Extended Scope Physiotherapist.

The physical examination you undertook was not thorough enough to diagnose effectively. You did not order further tests. Therefore under General Data Protection Act (2018) Article 17 and 19, I have the right to have this data removed via the Data Protection Officer.

I will be seeking a second opinion from a neurologist because of the risk of Subacute Combined Degeneration of the Spinal Cord. The removal of data shall be performed by [Name of Data Protection Officer] [Name of Trust or Health Board]. I am fully aware that Functional Disorder is a Psychiatric disorder and Pernicious Anaemia is a haematological disease with Neurological involvement.

😢

[purpleabc in reply to Narwhal10]

Thank you Narwal10, I did try to leave her a PAS leaflet, not accepted. I am going to be contacted by the ESP physio and I will tell him what happened and also what you said. I am stunned that when they come across people who have PA like us they don't think that maybe they should do a bit of research, especially when we quote NICE. Thank you so much

[Wwwdot in reply to purpleabc]

Hi purpleabc

I am so disappointed to read this, I am lost for words to offer comfort.

Narwhal is good at kicking that which needs kicking.

Don’t let this get you down, use it to fire you up and become even more determined!

🤗🤗🤗🤗

[Narwhal10 in reply to Wwwdot]

Well the neurologist will type into a computer whatever but unfortunately, Computer says no.

On a personal note, whilst studying and living in halls, I wanted a bar of chocolate from the vending machine. It swallowed my money. So I started rocking the machine side to side. The Security Guard caught me, I hissed, I have my period.🤬

Needless to say, he started helping rock the machine. Chocolate in hand, a curt thanks and a narwhal was placated. 🤣

I am also helping people including purpleabc with Data Security on here.

😘😘🤓

Computer says No. Little Britain.

[MrsTuft]

Lots of people get fobbed off with FND. Keep injecting! Check folate ferritin vit d etc all good too. X

[Angie47]

Hi

Sorry to hear about your problems, I also got sent to see a neurologist after disputing with the doctor about frequency of my B12 shots he was convinced high levels of B12 were dangerous and would send me for blood tests until my levels were low which brought on more neurological problems hence the referral. What a waste of time the neurologist told me 12 deficiency was a fallacy a catch all diagnosis when doctors didn't know what was wrong with you!!! Hence I went down the self injecting route after asking the doctor to look at the PAS site and giving him loads of information I had found, he also wasn't abiding by the NICE recommendations so totally understand how you are feeling

[purpleabc in reply to Angie47]

Thank you ! Hope you are feeling better . Self injecting is the only way to improve sadly. It is disgusting that we are looked down on when we do.The alternative doesn't bare thinking about. Thank god for the forum and it's amazing members. Wonder what the esp physio will make of it. I'll let you know.

[Angie47]

look forward to hearing how you are getting on could you tell me what is an esp physio haven't heard of one before. In the meantime hope you have a merry Xmas and Happy healthier new year

[purpleabc in reply to Angie47]

An ESP physiotherapist is an advanced physio , I was sent to him by the gp practice physio. He was really good and thorough, he was imagining the neurologist would do MRI etc. Happy Christmas to you too, hope the New Year brings you better health.

[Showgem]

I wish I was surprised but sadly I’m not. I’ve seen two neurologists since my PA diagnosis a few years ago and both were of the opinion that once your levels reach 1000 that more than 1 injection every 3 months isn’t needed. One of them didn’t even examine me (this was during lockdown so we were both masked and sat several feet away from each other). They both wrote to my GP saying any benefit from more frequent injections was a placebo in such patients requesting more frequent injections. I told my GP that I needed injections more frequently as I was going back to the way I was without them, I couldn’t even walk unaided. In the end he agreed to a trial of monthly injections which are still continuing but I strongly suspect that if I were to see the partner in the practice he wouldn’t authorise this frequency.

I would like to be open to tell them that I inject several times in between but I think they would be horrified and maybe even stop the monthly injections. I have continued to very slowly improve during the past few years so will keep injecting.

During the past year I had a fall from a stepladder causing damage to my hip ligaments/tendons/muscles and recently I herniated a disc in my lower back. I’ve had referrals to physiotherapy for these issues and have to explain that I had untreated PA for a long time which has caused nerve damage. My balance has never fully recovered and I have no knee jerk reflexes at all. My feet are still partially numb but I can now feel the probe when they poke hard underneath the instep of my feet and can also lift my big toe so I’m told everything is alright. On the whole physiotherapists have been more understanding and supportive than others I’ve seen in the medical profession.

Members on this site have been so encouraging, I believe that without the helpful advice I’ve received here I would likely have gone along with thinking the Doctors must know best and I wouldn’t care to think about the state I’d now be in.

Write your letter of complaint, it’s what I did when I got my GP to agree to a trial of monthly injections and continue to self inject as often as you need to.

[purpleabc in reply to Showgem]

I am sorry you are having so many problems. I agree with you about not telling the surgery about your own self injections. I shot myself in the foot when I joined a new surgery , practically begging for B12 injections, when they didn't step up I told them because I was so upset and desperate that I had bought it myself and was self injecting, and starting to see improvement. What a fool I was, I was then given a pack of 5 B12 ampoules to last the year . I wouldn't advise telling them although the gp did thank me for my honesty it did me no good. I wish you luck.

[Jillymo]

Dont be fobbed off with the FND diagnosis.

I think the person your refering to with regard to FND, it was I that had the issue with the ombudsman ! The neurologist I saw also said he new little about PA and B12 deficiency. The FND labeling is nothing other than a cope out for their ignorance. Have they organised nerve and muscle testing or a MRI of your spine ? It might be worth your while requesting they do so.

If you type into google is there a connection between PA and a B12 deficiency it cleverly doesn't give a direct answer, which is a bit like many of out consultants. I am seen by many consultants and as yet not one has put FND on referal letters or correspondence ! I agree it is deflating but dont take too seriously and carry on with the B12. You might feel worse before better but that is simply the healing process. Any progress is better than none so stick with it. It really is soul destroying to be what I feel gaslighted and pushed aside.

Sending hugs. 🤗 💐

P.s I am not requesting you to sign this petition but scroll down and read some of the stories - change.org/p/let-s-end-medi...

[purpleabc in reply to Jillymo]

Thank you. No there were no nerve testing or MRI's done. Just the diagnosis of FND . She was more interested in my hearing aid and vestibular diagnosis ! I will keep on and see what I can achieve hopefully through the esp physio . I can't believe we have to self medicate and I've also bought a tuning fork to test my own hip !!!!!🤐I agree with the gaslighting .

[Jillymo in reply to purpleabc]

When diagnosed with FND was it disgussed with you or explained ? The imbacile I saw didn't even mention it ! the first I knew of it was when I received a copy of the consultation letter and saw it written in at the top of my other diagnosed conditions. What a swine 🤬

I am praying the injections help you. 🙏

[purpleabc in reply to Jillymo]

I was quite confused when she said it was FND, never heard of it before. She said the nerve was fine, I could look it up. Not much of an explanation eh. I did and read that you can't give a diagnosis of FND unless you rule out anything else it could be, such as SACD , disc problems etc. She didn't even glance at the PAS paper about SACD, just said she knew nothing about PA . Did they rule out SACD with you? Worrying eh.

[Jillymo in reply to purpleabc]

I hadn't heard of it either ! I looked it up which confused me even even more. If you imagine a cercuit board with wires crossed it wont work or gives out the wrong signals. 🤔

The swine didn't rule anything out or did he consider the scoliosis of my spine or my many autoimmune conditions ! He was an arrogant man that wouldn't even listen to my symptoms. I no more have FND than I have a boil on my ruddy bum.

When I complained he admitted he were no expert in B12 deficiency! I took my complaint to Pals who pushed around for months I think in the hope of loosing it along the way. Eventually it went to the ombudsman / woman who was working from home. She went down stairs to take in parcels twice whilst I were on the phone. Then went on leave till the next year so somebody else had to be appointed. All very currupt tatics. 🤬

[purpleabc in reply to Jillymo]

Dear god. I will let you know what happens when I get a call from the esp physio. I am really sorry about your health problems, but because of them you would think an MRI/scan of your spine would be the first thing to do. Unbelievable. As for the ombudsman............Job should have been passed to another, disgusting tactics. All this stress, being treat like an old lady with a PA hangup , meeting medical professionals who know nothing or little about PA and don't want to even look it up or think about it is upsetting to say the least. Stress makes you worse !

[Jillymo in reply to purpleabc]

I had an MRI but they didn't do lower spine where I have the problem! It's like dealing with a load of imbaciles.

I hope you get some answer's and your health improves.

[Mixteca in reply to purpleabc]

Sounds like how PA/B12 D should also be diagnosed - by eliminating other conditions first. Hard battle to get everything else ruled out, I tried.