HELP

[COL2017]

SUBDURAL DEGENERATION OF THE SPINAL CORD..ANY DATA ON THIS CONDITION

[fbirder]

The Pernicious Anaemia Society has a factsheet available for members here -

pernicious-anaemia-society....

[Sleepybunny]

Hi,

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD (Sub Acute Combined Degeneration of the spinal cord)

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

SACD is mentioned in the following articles/books

B12 article from Mayo Clinic in US.

ncbi.nlm.nih.gov/pmc/articl...

BMJ case report

casereports.bmj.com/content...

Case report about rapid healing of SACD

ncbi.nlm.nih.gov/pmc/articl...

BSH Cobalamin and Folate Guidelines

UK document that gives guidance on how to diagnose and treat B12 deficiency

b-s-h.org.uk/guidelines/gui...

Books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

Link about writing to letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms present.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

Lots of B12 info in my replies on the the thread below eg symptoms of B12 deficiency, causes of B12 deficiency, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.

Worth looking at the pinned posts on this forum.

[jimmel196]

Subacute combined degeneration of the spinal cord. I have this, which is a result of my b12 deficiency and PA. It was discovered on MRI due to widespread peripheral neuropathy. My Radiologist friend told me the only fix is b12 and improvement will take a while, if at all.

[Hidden in reply to jimmel196]

That’s really helpful to know jimmel I was planning to book an mri scan myself to check this out as I suffer terrible back pain,it’s different now in that the pain radiates from my spine outwards down my back and seems to effect my lungs my shoulders my ribs etc.thank you for sharing.x

[jimmel196 in reply to Hidden]

Mine affected my cervical spine. I have no pain with mine just the peripheral neuropathy. An MRI would definitely be your best source to rule out that is a problem. I hope that helps and good luck to you.

[Hidden in reply to jimmel196]

Many thanks and I’m sorry to hear you’ve been effected by it take care x

[deniseinmilden in reply to Hidden]

Forgive me if I'm asking this again, but what are your iron levels like? Low iron can cause thoracic pain.

Vitamin D, calcium and magnesium are obvious other ones to question for bone pain, possibly with parathyroid function.

[Hidden in reply to deniseinmilden]

Good morning Denise thank you for asking.my iron levels are fine as far as I’m aware,I have had a full iron panel via medichecks.my ferritin is far too high but cutting out inflammatory foods is helping to lower that now and I’m due another check n that,vit d is checked regular as I have to supplement so that’s at a good level.I can’t take calcium right now even though my dexa came back showing oesteoporosis this time,it has gotten worse since last scan.Until I get this ct scan done on Tuesday to see what exactly is going on in my kidneys I’m having to be careful with anything I take as we are not certain it is stones so that’s why I need the scan to confirm then we can go from there.My Professor has been really good in pursuing anything I’m not happy with but it’s slow progress I’m very impatient because I want answers before things progress to a critical stage,I’ve passed stones before and it’s as bad as giving birth lol,these new ones are too big to pass so I’m worried about this.apparently aok with my thyroid and adrenals etc.many thanks xx