My apologies for posting so frequently recently but I wanted to share this in case it’s helpful for others on this forum.
I have been waiting for nearly a decade to see a neurologist for my PA neurological complications and I wasn’t referred because of PA but because I started developing seizures. About 18 months after they started I (by accident) discovered that calcium controlled the problem and strangely my increasingly severe pins and needles calmed to pre-seizure levels. Despite letting GPs and others know I still haven’t had any real help even though calcium deficient seizures is pretty serious and apparently rare.
But just like PA you may want to be aware that it’s probably less rare if autoimmune gastritis is developing. This is because in addition to B12 it also affects calcium absorption and other micronutrients. (Please take care though because too much calcium also causes issues. )
Have you considered contacting a nwspaper to tell them you have been waiting 10 years for a NHS consultation. I'm sure they would love the story. Once the shit hit the fan you would get a consultation immediately.
Thank you for the post and information it was helpful to me. Consider that perhaps the reason you are still waiting to see a neurologist is that your GP had decided you don't need to see one and has has never requested it without letting you know. Just a thought.
Well my story is that I was misdiagnosed in 2013 and although I continued to worsen it wasn’t until I moved temporarily to a new area that my new GP recognised ‘the sighs’. Blood tests showed low b12 (88) and GPC antibodies positive and so I received an ‘autoimmune b12 deficiency’ diagnosis by phone but apparently not properly noted. He retired the following week and my initial symptoms weren’t recognised as being part of the disease. I later returned to my original GP who not only paid no attention to it but allowed the initial misdiagnosis to be changed to an even more severe misdiagnosis and *not inform me*. Because GPs are trained by at the same centre, even though I reported severe neurological issues, they didn’t understand the significance. I then went to a private neurologist who gave me FND diagnosis despite FND guidelines saying it’s not possible to have PA and FND as comorbid. I started having seizures and movement issues in 2020 which is why I saw the NHS neurologist. However the neurologist wrote to the GP saying that I wasn’t referred to him for B12 issues and so it seems he can’t do anything until the GP writes a new referral for PA which won’t happen.
Lol, if what’s happened to me went to the newspaper the NHS staff would be in deep trouble because the local hospital left me on the A&E toilet floor unable to walk. I didn’t discover the problem was likely subacute combined cord degeneration until my autoimmune b12 diagnosis the year after. I sometimes want to scream and let the world know but newspaper stories are too fast. Real change needs to happen. I’ve been slightly lucky to encounter PAS and this forum but there are plenty of people out there still struggling in a healthcare system that is poorly educated and not working safely anymore.
I had similar treatment from the NHS. I passed out and remained unconscious for over 30 minutes and was taken to A&E. They discharged me from A&E unable to walk and talk properly. When I was struggling to get dressed I discovered I also was unable to control my bladder. It was so embarrassing. My urine ran out under the curtain around the cubicle. The nurse saw it and got some dirty towels to soak it up. Never mentioned it to me or asked if I was having problems. But it was during covid. I just wanted to get out the place. So I didn't say anything either.
BTW. They didn't diagnose me either. They couldn't find any reason for my collapse. It was much later that I realised it was due to my very low B12 levels.
P.S. During my collapse I pooed myself. I was in A&E for over 7 hours. No one bothered to clean me up. I was the only patient there.
If it was anything like my A&E experience they wouldn’t have checked very much. In my case at all … no blood tests which is unfathomable in retrospect.
I don't know what tests they carried out. They didn't tell me. I left A&E in such a state that I thought I was dying. My GP wasn't seeing patients because of Covid. I was left in limbo. My experience of the NHS service during covid was awful. Weeks later a nurse was reviewing my notes and told me that I should have been given a brain CT scan by A&E.
What happened to me was such a shock that it made me decide to live a healthier lifestyle. I was overweight and had problems with bloating and very bad acid reflux. I went on a very strict diet as soon as I got home. Stopped eating bread pasta cakes etc and within 24 hours the bloating and acid reflux vanished. Reseached on the net and found out I was probably a celiac. The celiac forum recommended taking B12. Within 24 hours of taking my first B12 tablet I started to be able to walk and my speech got much better. And my blurry eyesight went back to normal. It was like a miracle. My neurologist say my rapid response is quite typical. And the rest is history. In hindsight my collapse was the best thing that ever happened to me. I had had many signs of B12 prior but my mental health was so bad I couldn't be bothered to do anything about it. I was slowly ' going down the pan'.
Interesting. Calcium is needed for b12-absorption. The reason metformin can cause b12-deficiency is thought to be that it somehow interferes with calcium, and a calcium supplement can help people on metformin to absorb b12 better:
Very kind of you. Yes, I am restarting vitamin d now my tests have been taken. Unfortunately I can’t take vitamin k as it could lead to CAPS as I have APS.
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