Just seen neurologist who has confirmed a type of Periferel Neuropathy.
After reading some horror stories around how unhelpful some neurologists can be, I was pleased that I saw a really nice one.
I told her my symptoms & said I SI B12 regular & though most symptoms have gone, some certain symptoms remain.
After doing reflex tests etc, she said I have "small fibre neuropathy"
Now waiting for an appointment for electrical nerve tests.
What were your symptoms?
Pins & needles in fingers & burning tingling feet.
This wasn't bothering me too much before it became painful after walking a short distance
What about muscle twitching and fasciculations?
Small fibre neuropathies tend to affect sensory and/or autonomic nerves. Motor nerves tend to be unaffected.
Good that you are getting some answers.
I had a neurologist that seemed thorough and attentive, although to my surprise, he said he didn't know much about B12 ! He sent me for electric nerve testing and a brain MRI.
At one point, he asked me suddenly if I yawned a lot, when I said "Yes!!" we both smiled....then the conversation moved on and I never found out what exactly that meant to him, but something was registering with him at that point. These aren't exactly yawns, more like involuntary overlapping air-grabs. Quite noisy sighs, sometimes a bit embarrassing. My sister, when she heard me, said "You yawn just like mum- makes me jump !" As far as I know, this is purely a B12 deficiency symptom. If it's also possibly anything else, I've yet to discover what.
No problems found by the way with brain or nerves.
She was really nice & said if SI has helped other symptoms then carry on.
What was just burning & tingling in my feet that I dealt with has now turned painful when walking.
Pleased the brain scan went well!
The yawning & air grabs you mention, I used to get every day, 2-3 times when just relaxing. All of a sudden I'd gasp for air & think, what was that all about!
I later found out it was called "Air hunger"
Since regular SI, I haven't had it & it has totally disappeared now.
I still can't seem to get rid of that "air hunger" even with an injection every other day. The stiff painful feet, and having to make a real effort to walk every step (rubber-band feeling) disappeared so long ago I didn't notice- which is the best reason I know for keeping your diaries ! When feeling disheartened and sorry for myself, I look back to what I was logging as my worst symptoms a year ago, 2 years ago, and realise that I am still making progress despite "blips".
I used to get something that I called "Pricklefoot"- which made my eyes water but thankfully never lasted long when it occurred. The only way I can think to describe this painful sensation is as if I had been sitting on a high wall, and jumped barefoot directly onto a passing hedgehog ! This would happen when standing/ sitting/ lying down- so totally unrelated to any action or inaction. Naturally, we laughed about it after and I never took it to a GP !
Funny thing: I was from adulthood 5ft. 3-and-a-half in. tall , then got diagnosed with osteoporosis of the spine and wear and tear damage to lumbar discs and was measured as 5ft 2in. A year later, having been told the osteoporosis has improved somewhat, I measured a whopping 5ft 4 ! Either I've suddenly had a late-development growth-spurt at 60, or nurses are making conversion errors !
So onwards and upwards, Ritchie. Literally.
You've just made me laugh, even though the pain isn't funny.
I've waffled on so many times about this before on here but, I believe I have PA due to the medication my Dr gave me for worn out discs in my back which is the same drug that's caused the opioid epidemic currently in the U.S.
I also have severe Central sleep apnoea as opiates suppress breathing. But after beating the addiction to what my Dr gave me, it continued until my new Dr last year said Macrocytic Anemia & PA. Now obviously knowing that the Macrocytic Anemia carries oxygen around etc, explains the sleep apnoea & air hunger. Thanks to SI B12 now as 3 monthly not enough, air hunger is no longer & sleep apnoea has virtually vanished.
I'm now undergoing training to help addicts beat their addiction due to what happened to me, (even though my situation was "legal") as you rightly say, onwards & upwards.
Have you heard of "inversion Tables"?
Not sure if it would help you but I'm seeing my back consultant in May as I believe it would help with my back pain.
The feet are a new thing for me (apart from the burning & tingling"), & only hurt after walking in various shoes. So after a post a few days ago I got some insoles which don't really help. Looking now at different types of footwear that may help.
Will check out inversion tables, Ritchie.
Yes I have read your story, or parts of it, and really glad that you are now well enough to put energy into giving back to others. It is also inspiring for others on here who are looking desperately for answers and a bit of hope. It takes a long time, all this, and you cannot regret the "lost years" but learn from them and utilise them in helping others.
I like your honesty.
Felt like I was disappearing at times, and only Clivealive, Beginner1, Foggyme, Marz, Sleepybunny, Gambit et al were there to help me cling on. Gradually over time I have got bits of me back that I thought had gone, plus the 1/2 inch, which is an added bonus.
I felt lost too till I joined PAS & found this place. I'd never heard of B12D, MA, PA & thought Folic Acid was something my ex took while carrying our daughters, didn't know it was something you took for a Folate deficiency.
You're so right about those lost years. Even though the amount I was prescribed should have & very nearly killed me, it has tought me that perhaps the reason I'm still here now, is to help others in a similar situation to what I went through & if I can even help just one person claim their life back, it would mean so much more than a big salary & any fancy car.
Thank you again Cherylclaire 👍
Don't think anyone's dying request has been "Can I just have a last moment alone with my Porsche ?" - could be wrong. Often am.
Happy to be happy, long as I can pay my bills.
😁 I think there actually are people out there who actually say that 🙄
When I was going through what I went through, I went from having no money worries at all, having my own paid up 4 bed house, after struggling for years & working all hours to get there for years, to then being worried about being kicked out my council flat due to not even having enough money for a pint of milk & worried how I would pay my next bill.
Now I've beaten the hardest thing I believe I will ever have to face, I can now, (I believe) achieve anything.
That's why I just want to help those who believe they don't have any way out.
Sorry for being so "deep" but I think I had to experience what I did to actually be In the place I am now, just wanting to help others, when there was no help for me with what I went through.
I was actually told by 2 rehab places at the time, "if you're on Heroin we'll help you, so we can't help you" even though what I was given was stronger than Heroin, but because it was from my Dr, I was told there was no help & turned away. Now I look at it as every cloud hey ✊
So, as you say, onwards & upwards & if you get an inversion table, it stretches your spine to relieve pressure on your discs, hense relieving the pain. But, there are people with some conditions who cannot use them. Research them first but I think it would help with my back problem.
I have found that the people most able to help me with understanding my B12 deficiency have been those that have been through it, rather than those who I expected to know the answers because of their specialities.
Having waited for 6 months or more, your consultation time to put your case forward is usually a matter of minutes, especially when they are running really late, then mostly crying out of frustration and disappointment before getting the tube home. In the end, I'd make sure I had a treat planned for after, just so the day was not a total scrubout.
You first with the back-stretching, Ritchie, although I must admit, I've always wanted to be tall.
seeing neurologist, advice on b12 injections welcomed…
Neurologist appointment 
New neurologist?
Un knowledgable Neurologist aahhh!!
