This morning i have had my first appointment with a neurologist, he seemed nice i told him everything and that i had been SI. He didnt even seem to care about the B12, i am now waiting on an appointment for brain & spine scan.
He says he is leaning towards FND functional neurological disorder and these scans will rule out MS etc.
Trying not to over think & worry, im just not sure how i feel that the B12 has helped me, he says it could be placebo.
On the upside, hopefully i am getting somewhere. 😊
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I hate it when they placebo. . I was also told by first neurologist I am addicted to b12 Injections?? And they were toxic.
He didnt write that on letter to Gp though!! Good they including your spine. I thought I was having spine as well on my second mri brain one. But it said cervical which was neck .
Nackapan i feel that they have helped me loads! I havent had one for about 4 weeks now and i can feel the nerve pains coming back & my hips hurt so bad where as when i keep up my injections every 2-3 weeks they are almost non existent. He didnt even mention anything about my b12 maybe even playing a part in my symptoms.
FND has alot of the same symptoms as b12 deficiency and MS apparently without causeing the berve damage which i guess they will see on the scans. Have you heard FND before?
But like we said hopefully it is a start & fingers crossed for the best outcome.
Yes I have heard of it. Like you say seems to duplicate symptoms of other things.
So good you know your b12 injections help you.
I was completely thrown when the neurologist thought my symptoms nothing to do with b12 deficiency. It quite scared me.
I'm 2 years on now. On b12 injections every 6th day . Slowly slowly getting some relief. Every day have head pain of sorts tinnitus ect ect. At the start I coukd walk . So keep going with what's working for you .
Yes i get tinitus too, im glad you are feeling better i also feel much better than i did in the beginning, you kind of forget how bad you felt and how many syptoms you had.
Just trying to stay positive, im lucky to have got these appointments as i know many stuggle to.
The third one I saw was having b12 Injections himself . So he was much more helpful and open minded. I actually saw him for the ongoing head pain and headaches.
He admitted he knew little about it until he started to read up on it. He also could not manage the NHS 2-3 mo they even though caught early and he still able to work. He mustve known about the move towards tablets as he said to Gp in the letter to keep me on frequent injections. He said at appt. He wasnt convinced about tablets being enough to keep levels high enough. I paid to see him as the NHS one discharged me .
He thought my symptoms nothing to do with b12 deficiency and thought I had post concussion syndrome. It was him that really upset me as so ill and said b12 injections were toxic . I was addicted to them and I must get off them because of causing cancer .
I at the time was on every other day!! That night had the worst migrain event . Mat have been lights in the hospital but his consult certainly didt help.
The first neurologist was lovely. He actually tested my reflexes. Also balance . He also explained the brain MRI. He did however persuade me to try amitriptyline. As he was the 5th medical person to advises this I did.
I know it helps some. It gave me 2 days off pain as so drugged then was worse. ? At least I tried. Difficult to get off though.
No one to date has explained vision problems ect I hope the neuro opthologist can help. Been waiting 9 months now.
Amazing where are you fbirder. My husband saw 3 neurologist. The 1st two privately and was quite rude when I said his B12 was only 51 range optimum 728 I think done through blue horizon and PAS shouldn't be advising and telling me hi needed extra injections. 2nd one did a dat scan and said he did have Parkinson's but very mildly. Of and B12 nothing to do with it.
The 3rd was brilliant and said she would never have diagnosed him with Parkinson's originally. But and but again B12 nothing to do with it and he is getting 3 monthly injections and it was good enough. So 3 monthly inject ion of B12 and sinemet for the Parkinson's but if it was mild he has gone down hill very very quickly? It's a strange one.
My local hospital was where I was my first neurologist. He only does NHS work one day a week, the rest he is private. He decided that my neuropathy wasn't caused by B12 or diabetes, but couldn't be sure what it was. So he referred me to a London expert in peripheral neuropathy. This guy was excellent. He ran loads of tests and told me I had Idiopathic Axonal Neuropathy. He then explained how it would progress, if he was right, and told me to see him 9 months later. He was spot on.
So I know what I've got and I know how it will progress (very slowly) I just don't know what causes it. All I know is that it's much more common in tall people - like me.
Ah that's interesting as my husband is tall 6ft 2 ins. Neurologists has just ordered MRI scan to look for stenosis and scan on bladder which he had today and was told he had retained 19 mls in bladder after peeing. So we wait for the actual results on both those scans.
We live in West Sussex thinking you might be close if you went to London. A going to look up your diagnosis and does that mean B12 doesn't help you? Take care and best wishes
Yes, I am close - West Sussex also. But only just outside East Sussex.
When I was first diagnosed with PA my GP did some tests for neuropathy and it was very slight. Over the next few months, with me injecting once a week, it got worse and worse until I got sent to see the neurologist. The timing of it was the main reason he didn't think it was anything to do with B12.
The big clue was the nerve conduction studies. They showed a total absence of a SNAP - Sensory Nerve Action Potential. That means I can't feel anything below my ankles.
I was told I had MUPS, FND, psychosomatic symptoms etc etc
If I had accepted what GPs and specialists said I am sure that by today I would have developed dementia and spinal damage; at the time of these diagnoses I already had pins and needles in my spine and dementia type symptoms and multiple other typical symptoms of b12 deficiency affecting various body systems.
My experience was that getting a label of FND/MUPs meant efforts to find physical causes of symptoms more or less ended.
I do accept that some people develop FND/MUPS. I just think physical causes of symptoms such as vitamin deficiencies, undiagnosed auto-immune conditions etc should be excluded first.
Only one of multiple neurologists I saw had a clue about B12 deficiency and even that one didn't give a formal diagnosis despite me having typical symptoms and some clues in blood test results.
I was told to look at this website below about FND by one neurologist and after reading it I thought I know there is something physically wrong with me. There was nothing on this website about my excessive dandruff, constant fungal infections, hair loss and many of my other symptoms.
More B12 info in my detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
Could you or anyone please tell me do pathology tests for serem B vitamins show true result or does a person need different tests to show if you are low on any B vitmins that have been processed by your body, otherwise known as Methylation.
That is the same website my neuro gave me to take a look at, i did think that possibly for me a FND diagnosis was similar to a sub clinical diagnosis, meaning no cause found. I dont understand how when i SI my tiredness & breathlessness lifts... my pins and needles and shooting pains virtually disappear but yet for FND b12 does not help as the nerves are not damaged? 🤔
I think my main issue is my b12 was 183 and first test which wasnt quite low enough ehich is maybe why they dont pay much attention to it but from what a read when people starr getting to low 100 they can be reeeeally poorly.
So fingered crossed my results come back clear but i also then have the issue of just being diagnosed with FND with no b12 treatment.
You would exepct a neurologist to know a lot about B12 given its importance in maintaining a healthy neurological system!!!!! Lol. But what do I know..............
I saw a neurologist a few years ago and I hope to god I never ever need to see them for a brain condition. My symptoms were all due to peri menopause apparently and deemed b12 injections a placebo effect.
Hi, I saw a neurologist after an MRI showed up a cervical spine stenosis. The MRI was done because I found difficulty in making my legs work and I was having terrible migraine headaches, this was after my B12 serum blood test showed I was very low. By the time I saw the neurologist I had been S I for nearly a year and was finding walking a good deal easier.
He wrote to my GP saying the symptoms of both spinal stenosis and B12 deficiency can be similar, and was happy for the surgery to continue treating me with B12. Made me laugh as the surgery have always never recognised the B12 deficiency, and say I am going to suffer from B12 toxicity.
I have to inject every four days or the symptoms come back.
GPs are in my opinion as useless as a chocolate teapot. Having had a telephone appointment yesterday I asked how my appointment with another surgeon to look at my knee replacements was going as I have waited a year since seeing the first surgeon. They didn't know a thing. But we're quick to blame covid 19 for the fact I have waited now for two years to have a surgeon look at them that could actually do the operation.
Thats rubbish for you jointpain. Couldnt the doctor at least offered to chase it up!! Do you know the name of the surgeon? If you do ring the hospital and ask to speak to his secreatary so she can check where you are on the list. They are usually very helpful.
I understand. This is exactly the position I am in too. My brain and spine scan later this month. And like you, my neurologist seemed merely amused at my b12 SI. FND is nit really a diagnosis is it. It's just a name describing the fact of ones nervous system badly functioning.
I feel there is nothing to lose re SI b12 so shall carry on anyway.
I think i am going to have to put on my big girl pants if i see him again, maybe best for me to put it on paper as i go all to pot when i get in that room.
Im thinking i may pay for private IF tests as i haven't had that done yet.
Really baffles me that b12 isnt being looked into further but hey what do i know 🙈
He said the wait for scan wilk be 4-6 weeks, doesn't seem that long considering this all started last October and i only got to see neurologist yesterday. Is yours soon?
After reading blog post above and hearing about other forum members in Gloucestershire having difficult experiences, I would personally be wary of what Gloucestershire GPs and specialists say about B12 deficiency.
My partner spent years visiting a neurologist. We obtained a great list of what his problems were not. Eventually, they agreed to a full genetic panel and that identified his problem. What I’m trying to say is, try not to worry yourself sick wondering. We could never have imagined that mobility problems starting at age 50 could be caused be a faulty gene inherited from both parents. I wish you luck with all your forthcoming tests x
I’m so sorry I’ve just seen your question. It took years of visiting neurology before they admitted defeat. One neurologist had said from the beginning that a full panel was required but due to the cost it was unlikely to be carried out on his recommendation x
I don’t know what to say to you Kitty except I’m sorry you’ve been dismissed like that. I have spinal stenosis and have been lucky enough to have a neurosurgeon who takes time and care to explain his decisions. The left hand side of my body is being compromised and a spinal decompression operation is on the horizon. It makes such a difference when you’re treated as a person not a defective body. I hope you find the help you need somehow soon.
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