Sub acute degeneration of the spinal cord.

[Ilala]

Has anyone here successfully managed to persuade their GP to give this diagnosis without referral to nuero?

Also has anyone ever had an mri prove that they had this demyelination?

Thank you.

[clivealive Forum Support]

Hi Ilala are you a member of the Pernicious Anaemia Society?

I believe that the Chair of the Society, Mr Martyn Hooper (MBE) has a diagnosis of Sub acute degeneration of the spinal cord.

[Ilala in reply to clivealive]

Yes I am a new member. I have spoken to Martyn. I was wondering how many others were affected. I am just about to draft a letter to my GP.

[clivealive Forum Support in reply to Ilala]

I wonder about my own spine but I have no idea what the symptoms would be.

My doctor said "the knife between my shoulder blades" was due to my age (coming up to 77) but then I've had P.A. for 46 years.

[fbirder]

I don’t think you could gets a concrete diagnosis without a neurologist and an MRI.

Or an autopsy.

[Sleepybunny]

Hi,

I think a GP might suspect a diagnosis of SACD but a neurologist would need to confirm it.

I am not medically trained.

Info about SACD

PAS news item on Neurological Consequences of B12 Deficiency

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

SACD is mentioned in following 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). Book is up to date with UK b12 guidelines.

"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.

I think there have been forum members diagnosed with SACD. Might be worth putting SACD or "sub acute combined degeneration of the spinal cord" in search box on this forum.

A search for "sub acute combined degeneration spinal cord" on following B12 websites may produce some useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

[Jojogaunt]

My GP sent me for MRI due to neuro problems and I got diagnosed with it via that, and then PA soon after.

Ask your GP to send for an MRI, otherwise call your local hospital to see if you can pay privately for one.

[Ilala]

Thank you so much for this info. That’s super helpful. Did they mri just your spine or other areas too such as hands where parathesia happens.

Thank you.

[Jojogaunt]

I’m sure they can do the whole body, but I know they were concerned with my spine due to strange sensations I was having (felt like cold water running across my back and my hand felt like I had spilt boiling water over it) so I think mine was probably just concentrated on my spine.

[Ilala in reply to Jojogaunt]

Gosh that sounds very nasty. I haven’t had boiling water sensations but I’ve been unable to walk and have spine pain also a lot of numbness.

[Jojogaunt]

Yes, it was horrid, I kept running my hand under cold water as you would a burn, very bizarre. I get numbness too, in my hands & feet mostly, tends to be when I’m in bed at night, it wakes me up.

It was the mri that lead to my pa diagnosis, I don’t get many neuro problems now except the numbness at night, but that’s probably due to damage already done & nothing we can do about that.

Think you should definitely ask your gp to look into having an mri, just to rule out anything more sinister if anything.

Good luck

[Ilala in reply to Jojogaunt]

Thank you so much.

[Jojogaunt]

There was a time when I was unable to walk & I thought it was connected to my pa & spine but turned out to be all due to lack of vitamin D, and therefore lack of calcium so my blood was taking calcium from my bones causing osteoarthritis.

It’s amazing the affects a lack of couple of vitamins can cause!

Have you been diagnosed with PA yet?

[Ilala in reply to Jojogaunt]

Yes. I think my GP has accepted it. So hopefully he did actually write it in the notes.

Yes it’s astonishing what deficiency can do!

[linkerror in reply to Jojogaunt]

How much time it took for you to recover from this mess?

[Jojogaunt in reply to linkerror]

It’s a long time ago now that I was diagnosed but after my loading doses I noticed improvement. But then I went on to 3 monthly injections & the back & hand problems came back, I then went to every 6week injections (as this is the time he fog would come back & make work impossible) and before long I forgot all about it.

You need to get the right dose for you(as we’re all different, some need more than others), I now inject as & when I need it, can be every 2 weeks in wintertime and then during the nicer months I can go a lot longer between injections (less bugs about)

Once you get the dose right for you (only you can work that out, not your gp) then you’ll notice it getting better.

[Sleepybunny]

Hi again,

"So hopefully he did actually write it in the notes"

If you're in UK, you are entitled to ask for a copies of test results/medical records. Maximun cost in Uk for test results is £10. Maximum costs for set of medical records is £50.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

[SusanLMckinney]

You don't need a nuero if you have nerve damage. That is Subacute combined degeneration.

[SACD]

I’m in much the same position. My lumbar MRI last year was clear but I can’t mobilise without crutches or a wheelchair now and have just been diagnosed with B12 deficiency last month (I requested the test) A week after that I tested positive for coeliac antibodies. I’m currently waiting to see a gastroenterologist, another neuro (was dismissed as depressed by the last one) and a physio. So we’ll see. B12 injections initially helped my back and legs slightly but it all went backwards once the loading doses stopped. So I’ll let you know if I get dxed as SACD and how.

[Sleepybunny in reply to SACD]

Hi,

Sorry to read about your mobility problems. Have you been tested for PA (Pernicious Anaemia)?

Some links about SACD in my post above. I've also written some very detailed posts on this forum in past. May be worth searching for them.