SACD (sub acute combined degeneration of the spinal cord) with normal serum b12

[Sleepybunny]

Hi,

I came across this article about a patient with SACD whose B12 level was normal.

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

They responded well to B12 treatment.

Article starts with saying that immediate treatment is needed in patients with b12 deficiency to prevent permanent neurological damage.

[Sleepybunny]

Hi beginner1,

I'm sorry to read that you've had a horrible autumn. I hope 2020 will be an improvement on this year.

[Sleepybunny in reply to Sleepybunny]

Another link to an article about SACD in someone with normal range B12.

This link has been posted before.

ncbi.nlm.nih.gov/pubmed/191...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

[5576]

Merry Christmas I’m looking forward to 2020 too! Xx

[Cherylclaire Forum Support]

Missed you!

[Sleepybunny]

I look forward to more of your cartoons.

[Cherylclaire Forum Support]

Thanks very much for that, Sleepybunny - very interesting.

"Normal cobalamin serum levels do NOT rule out a cobalamin deficiency" - great to have in writing. Also citing "diarrhoea" as a symptom. No macrocytosis present either.

These could all be of use to people trying to get GP's help.

So a few points ringing bells but some alarm-bells ringing too:

I think this guy knew he was in trouble previously and was ignored-

"....especially no gastrointestinal, haematological or psychiatric disorders were proveable."

(not "present") and "Furthermore, a subacute progress of disease was reported by the patient....." in the conclusion.

It would be even more interesting if there was some input about that journey from the patient's perspective and a follow-up with him regarding long-term treatment and efficacy, don't you think ?

Interesting, for instance, that he got quite a bit of (late?) improvement and how long it took, and MMA returned to bang in the middle of range but that gastrin level still very high at 730 pg/ml (range: 13-115pg/ml) at 11 months on.

I can see also why my MMA results, at a stubborn but paltry 350-400nmol/L , are ignored as unimportant. His were a whopping 40,800 !!!! (Range: circa 0-280 nmol/L)

Also interesting that at this stage, he could not feel the difference between a pen and a rolled-up bandage- no wonder he fell off a roof.

I'm also unsure that "Lowered serum HoloTC is the earliest marker of cobalamin deficiency and reduced even before any clinical symptoms apparent" (Hermann W et al) is as reliable a first indicator as you can get.

I'm sure I have seen evidence pointing elsewhere for that - what do you think ?

I'll have a look.

[Sleepybunny in reply to Cherylclaire]

Hi,

"I'm also unsure that "Lowered serum HoloTC is the earliest marker of cobalamin deficiency and reduced even before any clinical symptoms apparent" (Hermann W et al) is as reliable a first indicator as you can get. "

I have the same reservation as you over this comment. I don't think any of tests used to help diagnose b12 deficiency eg serum B12. Active B12 (HoloTC), MMA and homocysteine are infallible.

This flowchart suggests that doctors should continue B12 treatment if patient has responded to treatment even if second line tests such as Active B12, MMA and homocysteine are normal range.

Look at bottom right of flowchart.

stichtingb12tekort.nl/weten...

[Cherylclaire Forum Support in reply to Sleepybunny]

Oh, yes -and I suppose if there was such an infallible test, we'd have known about it by now.

I still wonder why his gastrin remained high. I feel like he wasn't yet out of the woods there.

Also interesting that they were still looking for improvements (and better: finding them) 11 months on. That's hopeful .