An observation - any thoughts? - Pernicious Anaemi...

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An observation - any thoughts?

Caradoc1a profile image
10 Replies

I started SI on 22/12 EOD. Had more neuropathy initially, probably due to reversing out. Last few days I have felt much better with massively reduced brain fog and less neuropathy. Previous 2 days I actually walked (slowly) outside first time for 8 weeks. Did a very gentle 2.8k yesterday with a cafe stop and felt OK. Today is not a SI day. About an hour ago I had burning in my big toe joint then ankle and calf pain and then burning up both legs. Plus increased tinnitus, rapid h/beats and light headed. Having just watched Dr Andrew Klein's video on B12, I decided to self inject today as well. He said any B12 is excreted after 6 hours. Are my returning symptoms a product of doing too much too soon? Thank you!

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Caradoc1a profile image
Caradoc1a
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Rexz profile image
Rexz

One of the often overlooked and not so often mentioned things to heal peripheral neuropathy is blood flow. Yes, if you're B12 deficient B12 therapy is critical, but it takes a long time, months, depending on how deficient you were to heal. Part of this healing process is to get blood flow to your extremities. I know, as you're experiencing, that's tough as you're starting out but keep at it. Keep moving, exercise your legs, feet, and hands to heal those nerves. Vigorous massaging of feet is also great although it too can be painful. As I started from being bedridden for some time to about where you are , as I started to walk it became very painful for a bit. Like a thousand minions stabbing my feet with ice picks! This was those nerves healing and waking up along with Mast Cell histamine activation.Rexz

Caradoc1a profile image
Caradoc1a in reply toRexz

Thank you. I will now look up mast cell histamine activation! I am learning so much!!

bookish profile image
bookish in reply toRexz

Hi, did the mast cell issue persist or has frequent B12 calmed it down at all? Cheers

Rexz profile image
Rexz in reply tobookish

Yes, the nerves that were going to heal have healed as it's been several years now. I do have a small bit of residual numbness in part of right foot and right hand that after several years of B12 treatment is most likely permanent. But no more pain!!The thing about Mast Cells, there are trillions of them all over your body, mostly along the lining of digestive tract and skin. They work normally when you have an insult to your skin like a splinter or bee sting. These cells secrete histamine. This causes you blood vessels in that local area to dilate and become a bit permeable so they actually leak blood into the insulted area, say around a splinter. This allows red blood (what you see as redness) and white blood cells to fight infection. That's the normal function.

But if you have B12 def enough to cause de-myelination of protective coating of nerves, these nerves become exposed. If a Mast Cell is right up against an exposed nerve then that can cause sensory pain if that cell decides to produce histamine. What I found, through my visits to University Hospital was that I was "Sensitive" to Gluten and dairy. Not "intolerant" to as in celiac disease. Sensitive meaning it never showed up that I could sense anyway until my nerves were damaged from the B12 def. Then if I'd eat a piece wheat bread all trillion of my Mast Cells would fire histamine at the same time. Through ultrasound my veins were measured surely showing dilation and blood pressure drop. So I stopped all Gluten, dairy, and refined sugar, continued my B12 injections every four to six days. Continued to walk and hike. I have since experimented with eating some wheat bread (gluten) and experience no pain so I know those nerves are healed. This was over the past four years time frame.

I should have explained this a bit better to Caradoc1a

Caradoc1a profile image
Caradoc1a in reply toRexz

Thank you - I look it up and a bit overwhelmed!! 🙄

Rexz profile image
Rexz in reply toCaradoc1a

Yeah, it's a lot to take in for sure. These bodies of ours are actually quite fascinating. I think anyway. 😳

bookish profile image
bookish in reply toRexz

Wow. Thank you so much for all that. I've known since I quit both back in 2017 that gluten and dairy have been a problem for me since childhood (as symptoms which I'd had for years but never associated went away). Histamine didn't become an issue until I started getting more clear neuro symptoms 25 years ago, and only badly in 2018. I can tell for me that it is a mast cell problem as it isn't only histamine, I get other chemicals too, sometimes earlier than the histamine effects depending on the trigger. Quercetin and vit C, magnesium, ginger all help enormously but the thought that this might improve with the B12 is just brilliant. I had heard that the mast cell and nerve should be considered so closely tied as to be one unit, but hadn't considered the implications of the demyelination on that adjacent mast cell. I am so glad that they measured the signs for you and that you had something tangible. And more to the point, that it has resolved. Hugely encouraging. Thanks again and best wishes

Orchard33 profile image
Orchard33

They probably are. It takes a while to heal after long term deficiency.

Sleepybunny profile image
Sleepybunny

"Last few days I have felt much better with massively reduced brain fog and less neuropathy"

I'm so pleased to read that.

Other forum members have reported an increase in symptoms when they exert themselves.

Caradoc1a profile image
Caradoc1a in reply toSleepybunny

Thank you - it certainly felt marvellous. Is there an explanation as to why symptoms return with exertion? Is it due to still not enough oxygen in the red blood cells supplying muscles and nerves?

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