Neurology appointment

[Inishfree]

I have an appointment with a neurologist on Wednesday and not sure what to expect. I SI weekly but my symptoms seem to be worsening. I have bad anxiety, dizziness, balance problems, tingling all over my body. I am 76 so not sure if it’s due to my age, just feel very frustrated not being able to go out on my own. Any advice would be greatly appreciated.

[Wheat]

hello Inishfree, difficult one to answer.

I assume you have B12D/PA, so your symptoms could be due to this. It could be due to other things too.

However, the neurologist will only look for and consider neurological conditions, disorders.

When I last saw a neurologist he was quite thorough, asked lots of questions re symptoms and how long, how affected me, tested strength of my grip, and balance. Said FND. Wanted me to have spinal fluid draw, to which I said no. Little did he (or I know) it was low B12.

My gp thought after loading doses I would be much improved and tingling/numbness would have disappeared. So she referred me to Neurologist. Ive never attended . Healing takes time.

Also could be that you are either not injecting frequently enough and/or when you start to heal you can feel a lot worse. Stress can deplete B12 too.

Hope this helps in some way, Best wishes, x

[Inishfree in reply to Wheat]

Thanks so much for taking the time to respond Wheat, I had low B12 last year and was prescribed tablets which didn’t seem to help so decided to SI after finding this forum. I haven’t had any other tests done so don’t know if I’ve got PA. I’ll let you know how I get on x

[Wheat in reply to Inishfree]

Like me then , pills, spray did no good, only verbal P.A. from dr, so I s.i. Best wishes for Wednesday! x

[Inishfree in reply to Wheat]

Just to update you on my neurology appointment today, it turns out it was a clinician I saw to see if I needed any further investigation but he was very nice and thorough. I had to do lots of different manoeuvres, walk a straight line, do a zigzag walk (unsuccessfully), prodded to see my reflexes. He diagnosed me with inner ear problems which affect my balance and gave me exercises to do twice a day but said it may take some time to rectify. Thanks again to you and everyone who gave me advice, it eased my anxiety a bit xx

[Wheat in reply to Inishfree]

Thank you for updating me, its good to know how you got on.

I have a right ear imbalance that was diagnosed with some years ago. It was found when investigating my Nastagmus (eyes).

Your bad anxiety and tingling is not in my experience caused by inner ear problems but by the B12D. My body grip, core and balance has continued to improve markedly with s.i. of B12.

I hope you continue to s.i. especially as some symptoms are getting worse, which might mean an increased frequency of injections is needed.

One option might be to have a private Active B12 blood test to ascertain actual B12 celluar levels.

Wishing you all the best x.

[Inishfree in reply to Wheat]

Hi Wheat

Good to hear your symptoms are improving, I’ll carry on with SI and maybe increase for a while until I feel better. That’s a good idea having an active B12 test, I’ll definitely look into it.

[Wwwdot]

Hi Irishfree

Congratulations that you have an appointment and let’s hope it simply rules out other potential causes.

I no longer subscribe to “old age” mantra as since self-treating my own B12 and had a remarkable recovery, my 85 year old mother has come in the journey with me. She doesn’t self inject like I do but she now takes supplements including B12. She is on only a third of her pain killing meds for arthritis and is more active than she was a few years ago. I feel better than I did 10 years ago too!

The great thing about B12 is that you can’t overdose but it is important that co-factors are optimal - not just bouncing around just above minimal levels.

So my thoughts would be to keep an open mind during your visit, try to get some blood tests out of them, and don’t discount B12 until you have eliminated it yourself. It can be a simple fix and from my experience, constant B12 promotes healing which sometimes brings different symptoms which then go with more B12. I don’t think long term treatment is as simple as always taking the same amount of B12 for life.

All the very best

🤗🤗🤗🤗

[Rexz in reply to Wwwdot]

Oh Wwwdot

Really! "Keep an open mind". 🤯 For a brain exam? My fear was always they would find nothing in there and call me scarecrow! 🤣

Btw I agree as I rail when I hear a doc mention old age! That's especially sure to be an excuse for them to just move you on.

"If I only had a brain...". Now who sang that?

Rexz

[Wwwdot in reply to Rexz]

haha Rexz!

Well, you never know … there are rare medic B12 gems albeit like hens teeth!

🤗🤗🤗

[Inishfree in reply to Wwwdot]

Thanks for your advice, I’ll add to my list of questions! I am so pleased that you and your mum are doing so well, it gives hope to us all x

[jaybirdxNHM]

I am envious😳, I have been waiting for a very long time for a neurology appointment. I have been diagnosed with PA 30 yrs ago. Self inject EOD now. V.bad balance/ dizziness for 19 mths. No sign as yet of appt.Its very frustrating. I also have postural hypotension, so GP won't give me meds for the wobbles! He does approve of my jab routine, maybe because I fund everything myself.Sorry for the rant. 🤐🤬

I do hope you find the routine that suits you. Good Luck🤞🤞

[Inishfree in reply to jaybirdxNHM]

I’m sorry to hear you’ve been waiting so long for a neurology appointment. My new GP referred me about 6 months ago and was surprised it came up so soon. Hope you don’t have to wait too much longer as I can relate to how you must be feeling , take care x

[Rexz]

Hi Inishfree

Those pesky neurologists! They will first do a bunch of questions then a test with a tuning fork vibrating and place it on your extremities and ask how you feel it. Then they will have you stand, put your arms out and close your eyes. When you do this they'll certainly watch you wobble as most of us with PA do. They may have you walk down a hall and back again watching your balance issues. Then they may order a bunch of tests. Blood tests, maybe a lumbar puncture (bunch of backstabbers they are! 😜) to check CSF. They may order a brain MRI and/or PET scan. To look for white matter lesions caused by nerve damage or brain atrophy due to prolonged B12def. Oh yes they'll do a verbal cognitive test where you'll do some puzzles like connect the dots, circle a giraffe or other animal out of a lineup of animals etc. they'll give you a series of like five or six random words and ask you to recall them all. They'll most likely ask you to count backwards from 100 subtracting 7 each time so it will be 100, 93,....um errr that's as far as I got as PA has damaged my parietal lobe the part of brain where you do calculations. A condition called acquired Acalculous. I love that "acquired" as if I went out shopping and purchased it. I've had all these tests and mostly have trouble doing math in my head. Today I get to enjoy an EEG where they stick 25 electrodes on your head to test electrical activity of the brain. Yay!!! 🤯. During the EEG they inject electric shocks to see if they can make you a marionette no no I'm just teaz'n about that last electric shock part 🤪. Sometimes I just can't help myself 🤗

I don't know if they'll do all if these tests or just some of them. These are the ones I've had. And yes, they found I've a brain. It's a bit goofy and wonky but they confirmed it's in there!

Hope this helps Rexz

[Inishfree in reply to Rexz]

Thanks Rexz, you made me laugh out loud which is what I need at the moment, maybe the electric shock isn’t such a bad idea!!

Still a bit worried about tomorrow but at least now I know what to expect, just have to brush up on my maths 😂

[Rexz in reply to Inishfree]

Humor is the best medicine I think. Just try and relax. The scariest thing for me was the lumbar puncture aka spinal tap. But it was a breeze I didn't feel a thing and was done very quickly.

Bless you and good luck. Rexz

[jaybirdxNHM]

PS, I am in the old bracket, 81 1/2 🤣🤣 , and still have a few marbles.👏👏

[Rexz in reply to jaybirdxNHM]

Beautiful 81 1/2 going on 81 1/3!! 🎉🎂