Sacdsc not fibromyalgia

[sharonway96]

My doctors denying that I have sacdsc even though tests have confirmed it. The hospital n Nhs Direct admit I have it but GP won't. He's treating me for fibromyalgia n yes the tablets help numb some of the pain but it's frustrating that they sent me for tests but won't treat me for what the tests showed. It's not the first times it's happened. I was told I was depressed even though head doc said I wasn't, I was put on anti depressants for no reason

[Gambit62 Administrator]

Sorry but I have absolutely no idea what SACDSC is. Could you explain a bit more?

[fbirder in reply to Gambit62]

Sub-Acute Combined Degeneration of the Spinal Cord -

There's a good explanation in the member's area of the PAS website - pernicious-anaemia-society....

[Gambit62 Administrator in reply to fbirder]

Thanks fbirder - was just having problems getting to what the acronym referred to.

sharonway96 do you have any anaemia - may be that the first step might be disabusing your GP of the misconception that B12 deficiency means anaemia and if you don't have anaemia you can't be B12 deficient ... or it can't be causing any other problems.

If you aren't a member of the PAS then I suggest you join so you can access the document fbirder references above and may be pass a copy to your GP so that may be they start to understand the severity and the need to act swiftly.

You could also make a complaint about the discrepancy between treatment and specialist diagnosis - not quite clear what the mechanism is - but there should be a local Patient Liaison Group that should be able to help

[sharonway96 in reply to Gambit62]

Yes I'm a member of pas I joined about 6-7 years ago. I was diagnosed with pa while I was pregnant with my 13 year old. I had had lots of tests done by various doctors but they found nothing. They discharged me from hospital n with in 12 hours I was rushed back in unconscious n very close to dying. My b12 levels was in double digits n low. They did the blood tests n found I had the antibody that prevents b12 from food being used. I've been told without b12 injections I'd die. I hate needles but it's better than dying ☺ pas gave me my life back n helped make life worth living again.

[Coastwalker in reply to fbirder]

fbirder I tried to link onto your link, but was told I needed a password which I cannot remember haveing one before, so was also told to use my user name or email address, but the computer still said NO.

[fbirder in reply to Coastwalker]

As I say in the post - the document is in the member's area. So you need to be a member of the PAS. There's lots of goodies for members and you get to support some people working very hard to support us.

[Coastwalker in reply to fbirder]

I have been posting up on the PAS forum for quite a while now assuming I was a 'member' (one should never assume.)

Can you link or point me to where I have to sign up to please.

[fbirder in reply to Coastwalker]

The forum is run by HealthUnlocked. The PAS looks after this part of the forum.

Membership details are here - pernicious-anaemia-society....

[Coastwalker in reply to fbirder]

Many thanks fbirder

[deniseinmilden]

It's terrible how GPs think they are God and that it's OK to withhold essential treatment. I'm very sorry for you. You are not alone - lots of us have experienced the same thing and have resorted to self injecting.

Keep trying to get some jabs via the GP with the help and advice from the super people here and consider self treatment as well, once you know that your body is fine with the B12.

Please come back to us for more he as you need it. You could also look up my profile by double clicking on my name and see my post "My Experiences".

Sending you sympathy and lots of luck!

[Polaris]

Page 3 under 'Neurological Features' of the latest BMJ research document might help:

cmim.org/pdf2014/funcion.ph...

"An estimated 20% of patients with neurological signs do not manifest anaemia.13 Clinical features of anaemia may be minimal and the blood indices may not reflect important anaemia. Neurological symptoms can occur in isolation so it is important to consider a diagnosis of vitamin B12 deficiency in the presence of neurological symptoms of unknown cause, as neurological features may progress and become irreversible.

Subacute combined degeneration of the spinal cord involves demyelination of the posterior and lateral tracts. Initial bilateral peripheral neuropathy can progress to axonal degeneration and neuronal death if left untreated. This is followed by disturbances of proprioception, vibratory sense, and areflexia. Patients may mention clumsiness, poor coordination, and difficulty walking. Without treatment, weakness and stiffness may develop, manifesting as spastic ataxia. Damage to peripheral nerves results in sleepiness, altered taste and smell, and optic atrophy"

and more links you may not have seen:

ukneqas-haematinics.org... :

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord."

b12deficiency.info/what-to-...

[PAS-admin Partner]

""An estimated 20% of patients with neurological signs do not manifest anaemia." It's more like 70%...

[Polaris]

This might help too !

stichtingb12tekort.nl/weten...

"In 1956 Holmes 4 wrote in the British Medical Journal: “The great difficulty in establishing the diagnosis of vitamin-B12 deficiency with involvement of the nervous system is the lack of correlation between the haematological and neurological manifestations. There is also a similar lack of correlation between the spinal and cerebral symptoms of the syndrome. Early diagnosis is essential if treatment is to be effective, for the reversibility of neurological symptoms is largely dependent on their duration. The brain lesions which form part of the neurological syndrome of vitamin-B12 deficiency, although they have been recognized for more than half a century, are still much less familiar than those which occur in the spinal cord and peripheral nerves, to which by long usage the term “subacute combined degeneration” has been applied. The end-result of unrecognized and untreated cerebral lesions may be a severe dementia, even more crippling than the paraplegia produced by the spinal lesions, but early treatment will produce complete remission. The cerebral symptoms preceded the appearance of Addisonian anaemia or of spinal and peripheral nerve involvement by several years in some instances.”

[Sleepybunny]

"My doctors denying that I have sacdsc even though tests have confirmed it. The hospital n Nhs Direct admit I have it but GP won't"

Can you get access to your hospital records? In my experience its much more difficult to get access to hospital records than GP records. It may involve a formal written request to hospital records office. See links below.

england.nhs.uk/contact-us/p...

nhsmedicalrecords.org.uk/me...

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

I think it's likely that consultant (neurologist? ) who diagnosed sacdsc would have sent a letter to GP so it may be possible to ask GP surgery for access to letter or a copy of it. May be a charge for making a copy. Sometimes it is possible to arrange a visit to view records with one of administrative staff at GP surgeries.

Some people ask for a complete set of their medical records from GP surgery which can be quite expensive, probably at least £50 maybe more.

As Gambit mentioned it might be worth joining the PAS (Pernicious Anameia society) as they are a good source of support and information.

Unhappy with treatment?

b12deficiency.info/b12-writ...

england.nhs.uk/contact-us/c...

citizensadvice.org.uk/healt...

hdapatientcaretrust.com/ A charity that can give free second opinions on medical diagnosis/treatment.

I am not a medic just apatients who has struggled to get a diagnosis.

[sharonway96]

There was a report sent to my doctor, one for sacdsc an one from a head doc who said I didn't have depression. Unfortunately he ignored both reports, he put me on anti depressants even though the report stated I was not depressed and that I was just annoyed and angry with doctors not listening n the way my life is at the moment, being bed bound for 5 years through lack of treatment. I'm always on iron/folic acid tablets for anemia, im on so many tablets to keep my levels stable an to help pain wise if you rolled me over n over I'd rattle. I've learned so much from pas over the last 6-7 years they helped me gain some of my life n confidence back. N now I don't ask my doctor about pa, I tell them instead. Believe my they hate it. One nurse at my old doctors has pa but hers was mild n she told me pa isn't bad people just pretend it is to get attention. I blew up in her face, n never went to see her again . People just don't understand pa at all