NEW PA STORY GLASGOW

[magz73]

Recently diagnosed with PA although have had symptoms for 10 years, thought being given a name for it was the answer I needed to get the treatment I required! B12 level 99 March 14, 85 Sept 14, 3 loading doses later 300. My body continuously produces milk as a result of a hormone imbalance which is a result of PA, I also take a tablet every day for over active blabber again as a result of PA, I still display pins and needles, brain fog, memory loss, hair loss, insomnia, exhaustion, lack of concentration, dramatic weight loss, crippling stomach spasms as well as constant muscle aches, the list goes yet my GP insists I must wait until March 31st for my 3 monthly injection. I continue to be a single parent to a teenager and a 10 year old, work as a child minder as well as run a family home because I refuse to give to this even if I am in daily pain, shattered and most days are a struggle I cannot afford mentally or physically to give in. My main reason in reaching out to people in the same boat is to try to find anyone from my area to either chat with or that can recommend health professionals for me to approach as I feel my situation is quite desperate. I live in the Glasgow area and am able to travel to meet with doctors that have been recommended.

[Gambit62 Administrator]

I'm not from Glasgow area but really hope you do manage to touch base with someone.

Have you looked at the PAS site or the b12d.org site to see if they have groups around your area?

Someone posted an interesting debate from the Scottish Parliament on treatment of B12 in Scotland - though not sure that it really gets you anywhere - was a week nor so back. This is a link to it.

healthunlocked.com/pasoc/po...

I really don't understand the economics that puts people in a position where they are unable to really carry on with the lives and their work just for the want of a phial of B12 - not as if it is the most expensive thing in the world.

Have you thought about looking at other forms of supplementation or even sourcing B12 yourself - it's a cost but not hugely expensive.

[Gambit62 Administrator in reply to Gambit62]

I did try having a look on the PAS forum for links to details of where there are groups but couldn't find it since they revamped the site - so probably best to contact them. If you join you also get access to specialist nurses that might help.

[Chancery]

Hi Magz, can't help noticing your weight loss and stomach spasms there, which are a wee bit unusual with PA. Have you been checked for coeliac disease? It is just possible that you've had coeliac disease for a long time which has actually CAUSED your PA, and it is the real problem, rather than, per se, PA.

Just thought I'd mention it, because treating PA will only help a little bit if coeliac is the real problem. Do you get diarrhoea at all? Or other gastric problems?

Sorry, if you already know all this. Just thought those symptoms were a bit odd and worrying.

[magz73 in reply to Chancery]

Hi Chancery, thanks for answering my post. No I have never been tested for Coeliac as I don't have diarrhoea its just stomach spasms which have made me lose my appetite hence the weight loss, but thanks very much for your thoughts. PA is in my family and I have it but my GP is also considering other autoimmune disorder testing for me as Lupus and Arthritis are also in the family as my weight has now gone down to 7 and a half stone.

[Hidden in reply to magz73]

Hi magz,

It would be good to see a gastro as in the end with PA you have a small increased risk of certain cancers; stomach cancer etc. A gastro can then exclude other problems such as H Pylori, lack of stomach acid or to much etc.

See:

patient.co.uk/doctor/pernic...

"Gastroscopy

This is appropriate on diagnosis to confirm gastric atrophy and exclude gastric cancer and polyps. Gastric cancer is two to three times more common in patients with pernicious anaemia than in matched controls."

And:

"Associated diseases[2]

People with pernicious anaemia are at increased risk of developing gastric cancer, and there is an association with other autoimmune diseases (including primary myxoedema, thyrotoxicosis, Hashimoto's disease, Addison's disease, and vitiligo)."

And:

"When to refer[2]

Referral to a gastroenterologist should be considered for any patient with pernicious anaemia who has gastric symptoms and/or co-existent iron deficiency. Patients with pernicious anaemia have a 2-3 times increased incidence of gastric carcinoma and gastric polyps compared with matched controls."

I hope you get further investigations,

Kind regards,

Marre

[Chancery in reply to magz73]

Hi Magz. You may well know that you don't have to have diarrhoea with coeliac and an estimated 10% of sufferers present with chronic constipation instead, but also if you have early onset coeliac you may show some seemingly unconnected symptoms with no gastric problems at all. Also, having other autoimmune conditions is often a red flag for coeliac.

Anyway, just thought I'd mention it in case other investigations don't go anywhere. Apparently far more people go undiagnosed with the condition than are diagnosed, and it takes on average 10 years to get a diagnosis, so it's a common thing to be overlooked by doctors, often because it doesn't present with the classic symptoms. If you run out of ideas it may just be one to keep on the back burner, just in case!

[Poppet11]

It's actually not unusual to have weight loss with B12 deficiency. If you go back over history they have photos and film of patients who had drastic weight loss. It depends at which stage you get diagnosed.

The Scottish Parliament fiasco got nowhere. Scotland know exactly what is going on with their poor diagnosis and treatment of B12 deficiency and are doing nothing. Meanwhile people like Magz have to live worried and sick.

Here you go

b12d.org/gruesome-facts

Checked up on this man. He was in his 30s, very fit prior to becoming ill (a labourer) and he had no anaemia. And, yes, he died. He was one of Risien Russell's research patients. RR didn't believe patients needed to have anaemia to be diagnosed with PA. He, and many others, were proved right in the 1960s.

You get weight loss due to malabsorption of nutrients and muscle atrophy.

B12 deficiency goes untreated long enough, you get thin.