Pernicious Anaemia Society
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Neurologist tomorrow: anyone got any advice ?

This was a long wait and I don't want to waste my appointment, although not sure what to expect so it's a bit difficult to prepare for. What to take with me ? What to ask ?

[Having a bit of a bad day too, which doesn't help.]

I've got symptoms charts, list of all symptoms, letter I wrote to GP -which led to her sending me to haematologist, and the haematologist wants me to have a brain scan which seems like a very good idea.

Please feel free to let me know what else you would suggest I take, or what might happen.

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Hi Cherylclaire the only thing I would suggest that you write down what you want to say and stick to the script as it is so easy to get flustered in the face of the "experts" and to forget vital things.

I'm not medically trained so I don't know what questions you need to ask but hopefully others on here will.

I wish you well for the "interview"

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Certainly feels like an interview, doesn't it? Thanks, lovely Clive, for always being around when needed !

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Hi Cheryclaire , would like to wish you good luck tomorrow . My husband has an appointment with a nurologist on Saturday , I am going with him and was thinking of letting the nurologist lead the questions , but I think I also agree with Clivealive in having written questions as I know I'll be so nervous I'll forget . I think my husband has S,C.D.C. As he is extremely tired , lot of pain, fainting episodes , very week , he can hardly walk and needs a whealchair so I'm hoping the nurologist can help him as the Gp refuses more frequent injections for his PA until he's seen the nurologist . Please let us know how you get on tomorrow , thanks 😀

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Sorry, no advise. Just hoping it goes well for you.

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Will certainly let you know what to look forward to, once I've been, and hope it helps!

Best of luck to you both.

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Tightrope-walking all the time. It's difficult to remember that we are the clients, isn't it?

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Hi Cherylclaire.

Ask for an MRI of your head and spine. Also good if your Neuro orders nerve conduction tests and does a full Neuro exam (strangely, some don't).

Hope he knows that you've already been diagnosed with functional deficiency - good idea to take your information about that and discuss the recommended treatment in those cases as per the Talbot/Turner paper. Perhaps he could pass that recommendation on to your GP 😄.

Ask to be copied on any letters he sends to your GP.

Really hoping you get someone who understands B12 deficiency in all its nasty guises.

Good luck. Keeping everything crossed for you 👍x

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Hey, Foggyme, have just posted about how it went. Did not really understand about the niacin/ headache syndrome thing (just kept thinking 'not another thing!') but was happy with MRI head scan and nerve tests decision. Maybe you have some idea ?

Did not take the Talbot Turner paper, instead I quoted you regarding how the frequent injection thing works with Functional B12 deficiency, because you talk such good pictures ! (Talbot and Turner were a bit vague about treatment anyway, to me)

Also Martyn Hooper got more than a passing mention, although I didn't give the neurologist my copy- didn't get that piece of advice from Sleepybunny until I'd already left home. Would've been a bit of a wrench anyway, to be honest.

Forgot to ask to be copied in on letter to GP but believe it is Guy's transparency policy, anyway.

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Hi Cherylclaire...just going to dodge off and look at your update 👍

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Stay calm and if you can write a list of what you want to ask and take it with you, sometimes questions are given a fuller answer if you have someone with you .

Also would just say don't worry about your scan but if it is MRI be prepared for the noise it can be very loud .

Good luck and best wishes

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I kid myself that it's something like whale-song, and that I'm lying down in the belly of a mechanical whale. Then it's quite comforting .. and way better than silence.

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Hi Chertlclaire, yes good to write every symptom down as b12 effects lots of your body systems. Neurological, pins and needles electrical shock feelings in hands and feet, cotton wool feeling in feet, wrestles legs, banding. Then there is Vertigo, palpitations body shaking,tiredness, feeling of darkness or depression. Everything is connected and counts. Any symptoms are likely to be due to b12 deficiency so leave nothing out so you paint a clear picture of your day to day life. And try not to be nervous. I wish you well.

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I think I did okay, although a lot to get through and I went on a bit (yes, I've been known to !)- happy that I'm getting MRI scan on brain next time and electric nerve testing. Also okay with not getting a spine scan, since my walking is fine and I don't drop things.

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Hi Cherylclaire, that is good news and progress. I hope all goes well for you.

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"feel free to let me know what else you would suggest I take"

1) A supportive adult who knows about B12 deficiency and who is willing to speak up on your behalf ( can be useful to have a witness, someone to take notes etc.)

2) A copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" to leave with neuro.

3) List of useful quotes from B12 documents.

4) If you have balance issues, may be helpful to read up about romberg test and proprioception (awareness of body in space) problems. loss of proprioception sense can be associated with B12 deficiency.

en.wikipedia.org/wiki/Rombe...

patient.info/doctor/abnorma...

I had several neuro appts and not one neuro asked me to do any tests with my eyes closed.

I was asked by someone who knew about b12 deficiency if I could walk heel to toe with my eyes closed. I could but I was rather wobbly. A person with proprioception problems might not be able to walk in a straight line or possibly veer off and even fall over. I was only ever asked to do heel to toe test with my eyes open.....

Link to old HU thread that mentions proprioception

healthunlocked.com/pasoc/po...

I am not a medic just a person who has struggled to get a diagnosis.

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You are a lifeline and not "just" anything, Sleepybunny. Haven't got much time left, but wanted to thank you.

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Hi,

just thought of something else.

Some people on forum have shown doctors who are reluctant to treat B12 deficiency, articles on SACDSC (sub acute combined degeneration of the spinal cord) as an example of what can happen if B12 treatment is not adequate.

If PAS member, article in PAS library on SACDSC

pernicious-anaemia-society....

Other articles that mention SACDSC

ncbi.nlm.nih.gov/pubmed/191...

Martyn Hooper blog post

martynhooper.com/2010/09/21...

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How did it go Cherryclaire , hope it went well ☀️

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Have a look at my latest post about the neurology appointment -and hope you and your husband were as lucky with neurologist. Let us know how it went, okay?

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