Pernicious anaemia triggered transverse myelitis.

[qwertystar]

I’m on two methyl injections a day. From Monday I’ll move on to 3 a day. The dosage is 2500mcg.

I previously was on hydroxo eod.

This is really effecting my life. I currently am unable to walk unaided. I use my crutches.

[shaws]

I am very sorry you are having a 'very hard hard time' with Pernicious Anaemia and I hope you will soon have relief of symptoms,

My Mother also had this condition and I also have P,A. too,

My GP is very good in that he told me I can have as many B12 injections as I feel I need so I am now fortunate to feel well and symptom-free. At present I have B12 injection monthly.

I hope your symptoms will resolve soon.

[Wwwdot in reply to shaws]

Hi Shaws

You sound like you have a rare GP I only got 6 loading doses from mine and occasionally they will do a blood test. I need to go see them and at least verify their position.

Glad that you have found a workable treatment for your PA.

🤗🤗🤗

[Wwwdot]

oh my qwertstar

That is so sad to read your post.

How long were you on Hydroxocobalamin? What dose EOD ? What prompted the change to methylcobalamin? How long on this?

🤗🤗🤗

[qwertystar in reply to Wwwdot]

I I was on hydroxo for 2 years injecting 1500, EOD. It stopped my pins and needles, but no further improvement. I decided to change. I’ve now been on methyl for a month and I feel like I’m slowly improving. I can now walk a few steps unaided. I walk like a baby learning to walk lol. Tonight I decided to inject 2500 x3, I was suppose to do that on Monday but couldn’t wait.

[Wwwdot in reply to qwertystar]

hi qwertystar

I do hope you find the improvement you need and so good that you are self treating. You have lots of useful advice from others and I wish you well.

🤗🤗🤗

[qwertystar in reply to Wwwdot]

Thank you x

[Wheat in reply to qwertystar]

Hello quertystar, keeping my fingers crossed for you x

[qwertystar in reply to Wheat]

Thank you x

[Narwhal10]

Sorry to read,

Sounds awful, having inflammation of the spinal cord and at the cross section of the spinal cord. Have you had MRI, spinal tap and nerve conduction tests ?

Other co-factors are required for nerve conduction and inflammation can be reduced by ginger, curcumin and Quercetin.

nutri-facts.org/en_US/news/...

🐳

[qwertystar in reply to Narwhal10]

I’ve had a mri for my spine and brain. The neuro said I have high inflammation, I had a spinal tap a few years ago and nothing came up, also I had a nerve conduction and that also showed nothing! I currently drink ginger and turmeric tea. Thank you for suggesting Quercetin.

[Narwhal10 in reply to qwertystar]

Oh bless you. I do hope you manage to bring inflammation down. I was of the opinion I would try anything to help myself. People try and be well.

Sending a gentle Welsh cuddle x

[MrsTuft]

Hi. I have PA. And difficulty walking/standing. First Neuro said FND. Second looked back at scans and saw inflammation of my spinal cord so has ordered new scans. I see him this coming Friday to review. At first I was housebound, then walking with a stick, now unaided but far from normal. That’s after two years ED SI. I’ve been SI twice a day since I had Covid and it knocked me down. I wonder if TM from PA or if I have MS or Lupus or what. Hopefully I’ll find out. In the meantime I keep self treating. X

[qwertystar in reply to MrsTuft]

Good luck! What form of b12 are you taking?

[MrsTuft in reply to qwertystar]

Hydroxo

[mickeymouse42]

Is the Myelitis being treated with steroids? What are your levels of Vitamin D?

[qwertystar in reply to mickeymouse42]

I was a steroid drip for 3 days. I haven’t been given any medication. The neurologist did say to keep taking Vit D with k2

[mickeymouse42]

Do you know what your Vit D levels are?

[qwertystar in reply to mickeymouse42]

My vit d is 140, optimal level is 200 but the range is from 100-250

[mickeymouse42]

Vit D levels are usually measured in nmol with anything under 50 considered deficient and higher end of range being 100. You seem to be using a different scale. Is your GP prescribing D3 (e.g. Fultium) or are you just taking over the counter drugs.

[chrisbuy63]

Would having a Rollator help you? I have one and it helps me a lot with walking on different surfaces and provides a seat when needed. I don't have a clunky old fashion contraption, mine is quite state of the art and therefore it is more expensive but I don't look or feel decrepit walking with it. We must find anything that helps us especially to get some movement into our legs.

Please let us know how you progress with the new injection routine. Also do your research to make sure you are getting enough potassium and folate when injecting so regularly.